Most patients actually do benefit from learning more about their diseases online. At least half of what I tell them in the office won’t get absorbed anyhow. And I don’t have the space to keep a million little “Living with Schnorkfloodle’s Syndrome” pamphlets lying around. So I refer them to what I consider to be reputable websites (not Big Phils Guide To Parkinsons Disease And Roofing Materials.com).
Neurologist blogger Dr. Grumpy, talking about online health information
Health information is the largest category of online self-help … and much of it is obsolete and sloppy.1 I want to publish a website that offers better quality information to consumers than is generally available. On the one hand, nothing could be easier: online health advice is such a mess that I can “do better” with practically no effort at all. On the other hand, it’s never enough for me to just hop over a low bar: I want to offer something a lot better, both heavily referenced and substantive, and as entertaining as possible. Smarter and funnier.
In a nutshell, here’s why you can trust the information published on PainScience.com:
- I assume that anything that sounds too good to be true probably is. Because I cannot remember the last time something that sounded too good to be true actually turned out to be true. Just doesn’t happen.
- I make no big promises and offer no miracle cures. The pain problems I write about are tough problems. There are almost always options that patients and professionals aren’t aware of. But miracle cures? Definitely not.
- I keep it real, dude. I do not claim to the know the one true cause of pain, like seemingly every other alternative health “professional” on the internets.
- Minimal conflict of interest: I am not selling a treatment system or my own services.
- I’m candid. I like how mysterious and unknown it all is. I say “I don’t know” when I don’t know and I say “I’m guessing” when I’m guessing.
- I am inspired by some of the world’s best critical thinkers: I actively try to understand and emulate the reasoning skills of the smartest of the smartypants. I’ll never be as good as any of my idols, but those are the stars I use to set my course. “What would Carl Sagan do?” He’d probably check his sources, that’s what …
- And — crazy thing — I actually read scientific journals, I clearly explain the science behind every key point I make, I link to the original sources so you can check them yourself. More about sourcing below.
What would Carl Sagan do? Always a good question.
Some of my favourite sources
So the two most important things about PainScience.com are:
- Having a sense of humour
- Citations up the wazoo
Both are critical to credibility. Both are critical to health care. And they really do go together. That’s what the rest of the article is about: PainScience.com is smarter and funnier.
Seriously funnier, yes! The single most desperate pain client I have — a woman with a terribly painful disease — is also one of the funniest. We laugh through every appointment. Sometimes we have to stop working we’re laughing so hard. Why? Because, if you can’t laugh, you’ve got nothin’. It’s the only sane response to an insane world and a harsh life. I don’t know if laughter is the best “medicine,” but it’s certainly important.
Dr. Patch Adams, portrayed by Robin Williams in the film Patch, has tried and failed to convince the world that health care should be as personal and as much fun as possible — that laughter and a light spirit are either genuinely healing or at least essential to dignity and health care. He has spent his career trying to reform the American health care system and basically make it, in a word, friendlier. Unfortunately, he has largely been ignored, thanks to the juggernaut-like character of Big Medicine in that country.
But he convinced me.
Most health care and health care publishing is conspicuously lacking in a sense of humour. In my opinion, this is not a trivial matter — it is actually tragic, a clear and present danger. This is not an easy case not make. In a world full of tragedies, it barely even registers.
But it does matter to people who are injured and suffering from chronic pain. It matters to people who are trying to get good information in a health care system virtually devoid of personality, common sense, or straight talk. A sense of humour is absolutely crucial to good communication. I would argue that you almost literally can’t help people without it.2
It’s not that hard to see why a sense of humour matters to patients in pain. But why, exactly, is being funny important to credibility?
Because you should never trust anyone who doesn’t find things amusing. More obviously: you can’t trust anyone who takes everything too seriously. The irreverence of a good sense of humour is critical to seeing through crap. The problem with most really awful people in this world is that they don’t have a sense of humour and are taking something, probably lots of things, entirely too seriously: skin colour and sexual preference jump to mind as excellent examples.
You can trust me because I find my subject matter amusing. From the get go, I wanted PainScience.com to be fun and funny. Not a scream, mind you. Not a knee-slapping good time. It’s not a comedy website, and there’s only so much fun we can have talking about your tendons. But definitely light.
And so throughout this site you will find expert opinion delivered with an irreverent twinkle in the eye. A reader mentioned to me by email that the “problem” with PainScience.com is that “it’s exactly like this” — like getting lost in fascinating distractions in Wikipedia. A very generous comparison. I do try …
Now, let’s seriously get serious: the internet really is a terrible place to get health care information (but it’s not like there’s a good source, either)
Science and health are corrupted by markets. Advertising — both deliberate deception and crafty propaganda — play a far larger role in people’s lives than science. Selling stuff that people want (because they've seen the ads) takes precedence over the provision of what they need.
Dr. Jonathon Tomlinson, MBBS, DRCOG, MRCGP, MA, The Lawson Practice, London
People who don't have medical knowledge make the scary leap from symptoms, sometime quite vague, to fixating on whatever the internet says they must have … and here's what really grates me: if these people need a car fixed, they'll do a shitload of research to find a reputable place. They wouldn't dare just grab some random stranger and ask them to repair it. But when they have a health issue they'll take the word of a pet mausoleum architect with a nice internet site over that of a reputable, trained, medical professional.
Neurologist blogger Dr. Grumpy, talking about online health information
Really, you can’t believe how bad the situation is. Not only are there the obvious hazards of quackery and snake oil salesmanship,3 and of well-intended but hopelessly sloppy amateur publications, but the appalling proliferation of obsolete conventional wisdom, what I call the “misinformation explosion.”
One would think, and one would hope, that most information published by doctors is reasonably reliable. One would be wrong! Virtually all information about musculoskeletal health care online is hopelessly inadequate, regardless of the credentials of the author. Not only is it dry and boring and usually poorly presented, it has several severe, common deficiencies:
- No references to scientific literature at all in 90% of credentialled authorship, or sketchy references that, when checked, prove to be entirely irrelevant or poorly interpreted.4
- Obsolete information, hopelessly out-of-date recitations of conventional wisdom that read like they were copied out of a 15-year-old textbook, completely ignoring at least a decade of scientific research.
- Brief, shallow articles with nowhere near enough detail about complex subjects that literally cannot be understood without more information.
- Glib overconfidence, offering false hope, and general failure to acknowledge the limitations of medical knowledge or curative ability, usually due to the fact that the author is publishing for the purposes of selling a product or himself.
- Irrational conclusions that constantly reveal that the authors simply aren’t good at their jobs.
That last one sounds like I might be on the verge of frothing at the mouth with arrogance — which could well be another flaw we should add to the list! Unfortunately, I refuse to ignore the evidence before my eyes. I call ‘em like I see ‘em, and I do not suffer fools gladly.
General practitioners are barely educated in musculoskeletal health care — a deficit many acknowledge, and that has been proved by other doctors repeatedly5 — yet they often publish their opinions anyway. Even highly educated medical researchers are unnervingly prone to basic logical and statistical errors, such as mistaking correlation for causation, as in this thoroughly explored example, or the shockingly common significance errors. Countless “expert” writers have demonstrated their inability to put two and two together. Many experts just aren’t actually all that expert!
The exasperating reality is that most health care professionals weren’t at the top of their class. Indeed, half of them are below average! I graduated with several people who were really not ready to be therapists, in my opinion. All of those students failed their certification exams on the first try — about a third of my class failed on the first try — and some of them failed the 2nd and 3rd. While that does not necessarily mean that they are bad therapists today, some of them almost certainly are. If they didn’t understand such basic concepts when they graduated, I doubt they’ve picked it up since then.6
Therapists have weighty responsibilities, and need to be smart, literate, highly competent professionals — not just earnest and compassionate, that’s simply not good enough. Consider this example: I received an angry letter from the president of a prominent chiropractic organization who misspelled “professional” three different ways, and misspelled “cervical spine” as “cervicle spine” three times. The former I might be able to chalk up to sloppy typing … but “cervicle”? If there is one word in a medical dictionary that any chiropractor should be able to spell, it’s “cervical”! His inability to do so has disturbing implications. What else doesn’t he know?
And so on. And on and on.
I try to do much (much) better when publishing on PainScience.com. Here is how …
There is no universal certification process for health care information on the internet, nor even a peer-endorsed standard to which independent publishers can voluntarily adhere. Therefore, I have a ethical obligation to set a high standard for myself. These are my publication standards:
- Authorship is always identified, and my biases and credentials as a practicing massage therapist are clear and acknowledged.
- Promotion of my services is separated from health information. No article recommends my services specifically, and massage therapy is never exclusively recommended.
- Evidence is provided for all relevant or potentially controversial claims. More and better evidence is provided for claims that are more extraordinary.
- Evidence is offered in the form of references to publications in peer-reviewed scientific journals. The relevance and quality of the evidence is discussed. Randomized and controlled studies with larger sample sizes are preferred. Whenever possible, direct links to articles or abstracts are provided to facilitate the reader’s ability to check my references.
- When evidence is not available or of questionable quality, this is noted. Opinion is acknowledged as such.
- An attempt is made to acknowledge uncertainty and alternative viewpoints.
- Updates are logged.7 This transparency is in the spirit of the editing history available for Wikipedia pages, demonstrating an auditable long-term commitment to quality and accuracy. (Although they are “fine print,” I think they are more meaningful than 98% of the comments that most Internet pages waste pixels on. I log any change to articles that might be of interest to a keen reader.) See the What’s New on PainScience.com? page for all updates around the site going back many months.
- Errors are corrected. I am fallible, and I am always learning. Sometimes I read a scientific study that I wrote long ago and I think, “Was I high?” I have a long track record of publicly admitting mistakes.
I have improved my publication standards over time. Some older articles on the website still do not meet all of these standards, but are being upgraded just as fast as I can type, and I’m catching up. All new articles for at least two years now have met or exceeded these standards. Fortunately, I must be doing something right. This website has been endorsed repeatedly by just the sort of people I would like to impress: scientists, doctors, and scholars. Dr. Tomlinson once again:
PainScience.com is an excellent (and rare) example of good quality health care information on the internet. It deserves special mention for its transparency, evidence base, clear presentation, educational content, regular documented updates, and lack of any commercial promotional material.
Dr. Jonathon Tomlinson, MBBS, DRCOG,MRCGP, MA, The Lawson Practice, London
I know I’m doing something right when you get a compliment like that.
A (brief) case for universal standards (briefly)
This is not going to be all that funny. I get a little academic here. Honestly, this section is really only intended for a (ridiculously small minority) of curious professionals.
The web needs publication standards for health care information.
The public could be well-served by a certification process in which documents are reviewed by accredited health care professionals for compliance with some kind of publication standards. It is not reasonable, practical or desirable that these standards be as high as those for peer-reviewed scientific journals. Somewhat like certification of organic food, the standard should be just sufficient to guarantee that information is not “tainted” with profit motives, unsupported claims, and other flaws that pose a threat to the public.
The intention is not, of course, to regulate all health care information, or the internet, or even to make it difficult for health professionals to publish their opinions — even in scientific publications, opinions are acceptable, as long as they are identified as such. Rather, the goal is to educate information consumers and give them a choice between publications that do or do not meet a modest standard.
The strength of the internet is in the diversity of information available, and I would never want to see even the most obscene abuses of the medium suppressed — I have always believed that one of the great advantages of free speech is letting people make asses of themselves if they wish. What I do want is for misinformation to be seen in stark contrast to better, certified information, so that irresponsible publishers can be identified for what they are.
Quality control and scholarly Whac-A-Mole
I began this article by citing a study about the (poor) reliability of internet information about 10 common musculoskeletal problems (Starman et al). PainScience.com is only as good as I am, and I am probably more likely to make mistakes or (especially) have missing information than the websites of well-funded institutions. It’s logistically impossible for me to keep all my content completely up-to-date. Keeping PainScience.com current feels like an epic game of scholarly Whac-A-Mole.
My impression of most institutional and non-profit sites is that they achieve their high reliability by staying shallow. Uncritically regurgitating basic conventional wisdom in a simplistic way is certainly one way to get rated as “accurate”! It’s also a great way to leave readers without the slightest idea of how the last ten years of science have been changing things.
Hopefully PainScience.com is pulling up the average quality of individual sites. Importantly, I wear my fallibility on my sleeve, constantly emphasizing that all knowledge is provisional, and all scientific evidence is part of an evolving puzzle. That’s a major theme on this website. You can’t huck a stick around here without hitting some kind of epistemological disclaimer.
Or a word like epistemological.
And the referencing! Don’t forget referencing!
My sources are well organized, prominently displayed, heavily annotated, and almost always directly linked to an original for easy auditing. This is my weird, geeky little claim to fame that only librarians and scholars can truly appreciate.
Way back when I started this thing, in the late 90s, health information online was incredibly primitive. Here we had this magical new information system that “hyperlinked” documents together. It was a bibliographer’s wet dream. Imagine: not just referring to sources, but connecting to sources! Wow! The ability to make it easy for readers to audit your sources was a major upgrade to the entire concept of referencing — to fail to do so was suddenly an ethical blooper of scholarship. And yet no one was doing it! Back then, not even scientific journals did it.
So I got an early start.
Today, health information is now the largest single category of information online — bigger than porn! — and yet extensive, rigorous, linked footnoting and referencing is still a rare trait in privately published websites.
- Quackery Red Flags — Beware the 3 D's of quackery: Dubious, Dangerous and Distracting treatments for aches and pains (or anything else)
- The “Impress Me” Test — Most controversial therapies are fighting over scraps of “positive” evidence that damn them with faint praise
- Why “Science”-Based Instead of “Evidence”-Based? — The rationale for making medicine more science-based
- Alternative Medicine’s Choice — What should alternative medicine be the alternative to? The alternative to cold and impersonal medicine? Or the alternative to science and reason?
- Ioannidis: Making Medical Science Look Bad Since 2005 — A famous and excellent scientific paper … with an alarmingly misleading title
- Statistical Significance Abuse — A lot of research makes scientific evidence seem more “significant” than it is
- The Power of Barking — A silly metaphor for a serious point about correlation, causation, and how we decide what treatments work
- Starman JS, Gettys FK, Capo JA, et al. Quality and content of internet-based information for ten common orthopaedic sports medicine diagnoses. J Bone Joint Surg Am. 2010 Jul;92(7):1612–8. PubMed #20595567 ❐
Researchers evaluated the accuracy of top Internet sources of information about common orthopedic conditions, such as knee injuries and low back pain. Given how they selected websites to review, it’s almost likely that they reviewed this one! What I wouldn’t give to know.
They found that “the quality and content of health information on the internet is highly variable for common sports medicine topics.” Brought to you by the Department of Duh! That conclusion is just a bit of an understatement: there are lots of prominent sites peddling the most astonishing nonsense.
It is also not surprising that individual sites also scored relatively low on average. An individually run site is only as good as the individual running it, so there is bound to be a great deal of variability. Also, individuals are more likely to make mistakes or have missing information than groups.
- This opinion was also deeply influenced by the work of fun, rebellious psychiatrists Bennet Wong and Jock McKeen on Gabriola Island (Canada) and child psychologist Joann Peterson of Bellingham, Washington (RIP). They taught me that being fun was a health care philosophy. See Haven for more about their life’s work.
- QuackWatch, and several related sites, have been documenting literally thousands of scientifically bankrupt health products and services for decades now. The sheer volume of material reported on is overwhelming. Quackery is a gigantic business.
- See 13 Kinds of Bogus Citations: Classic ways to self-servingly screw up references to science, like “the sneaky reach” or “the uncheckable”.
- Doctors lack the skills and knowledge needed to care for most common aches, pains, and injury problems, especially the chronic cases, and even the best are poor substitutes for physical therapists. This has been proven in a number of studies, like Stockard et al, who found that 82% of medical graduates “failed to demonstrate basic competency in musculoskeletal medicine.” It’s just not their thing, and people with joint or meaty body pain should take their family doctor’s advice with a grain of salt. See The Medical Blind Spot for Aches, Pains & Injuries: Most physicians are unqualified to care for many common pain and injury problems, especially the more stubborn and tricky ones.
- It’s important for patients to understand that even the best therapists are simply not that well-trained, period. This is discussed more in the article Therapy Babble: Hyperbolic, messy, pseudoscientific ideas about manual therapy for pain and injury rehab are all too common.
- Historically, I only logged major updates for popular and controversial articles, and countless minor updates for other articles were not logged. Logging of all updates for all articles started in 2016.