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Knowledge Versus Expertise: The View From Consumer Land

“The internet, in democratizing knowledge, has led a lot of people to believe that it is also possible to democratize expertise.”

- SBM Commenter, yeahsurewhatever

I’ve spent the last few years of my life in Internet “Consumer Land,” doing what I can to bring accurate health information directly to patients. Of course, I have been surprised by the push-back, and the demand for misinformation. When I first left full time clinical work, it never occurred to me that people would prefer to read falsehoods when provided a clear choice between truth and error. I guess I was pretty naïve.

Journalist Lesley Stahl provided me with some helpful insights during a recent conference. She explained that the Internet has catalyzed a new method of information transfer – speed trumps accuracy, the line between pundits and journalists is blurred, and anyone who can get to a microphone can become an “expert.” Gone are the days of careful sourcing and fact-checking. And gone is the public trust in “mainstream media.”

This “democratization of knowledge” movement has seeped into the online healthcare space in both obvious and insidious ways. On the one hand, we herald patient access to detailed online information about their conditions as a boon to personal responsibility, autonomy, and empowerment. On the other, the snake oil salesmen are happily picking off “easy marks” as they wend their way through the pages of pseudoscience carefully disguised in language that mimics evidence-based medicine.

Yet even more insidious is the problem caused by well-meaning patients who establish websites to help others like them. Understandably frustrated with a system ill-equipped to address all their needs, they have taken it upon themselves to provide solutions outside of the medical establishment.

I’ll never forget the day that I first spoke to the founder of a company designed to empower patients through community-generated health information (for legal reasons I cannot disclose his name). The service provided patient-driven drug and treatment option ratings. This is exactly how our conversation went:

Dr. Val: I think this is a terrible idea. How can one person’s experience with a certain medication determine its usefulness for another? There are far too many undisclosed variables – what if the patients have a different set of comorbidities, allergy profiles, or have other medications on board? What about dose differences, gender, age, renal function? One person’s subjective analysis of a treatment’s efficacy for them is no way to judge its value for someone else. This is crazy.

Mr. S: But when we collect ratings from enough patients using a certain drug, we’ll really know if it works. The average of their opinions will make it clear.

Dr. Val: Are you also collecting information about all the variables I just described so you can compare apples to apples?

Mr. S: No, that would take too long. People don’t feel comfortable entering all their meds, their other conditions, the dose they tried, their gender and age, and that other stuff. It’s too much work and it is an invasion of privacy.

Dr. Val: Have you constrained the tool so that the treatments being rated correlate with their FDA approved indications?

Mr. S: No, the beauty of this tool is that people can enter any treatment they like for any condition they have. That way members of the community can learn from one another. Maybe someone has found a great new use for a certain medication. They can share that online.

Dr. Val: So essentially patients are giving other patients medical advice based on purely subjective experience?

Mr. S: Yes, but people don’t have to follow their suggestions. They can just scroll through the highest rated treatment options and see what’s working for the majority.

Dr. Val: Ok, please show me an example. Let’s look at the top-rated treatment for diabetes.

Mr. S: Here you go. The top rated treatment for diabetes is “dog-walking.”

Dr. Val: Not an oral agent or insulin?

Mr. S: No, the community prefers dog-walking.

Dr. Val: I’m just curious, Mr. S. What medical training have you had?

Mr. S: Oh, I’ve had fibromyalgia and chronic fatigue syndrome for many years. I’ve had so much experience with the healthcare system that I feel I know it as well as anyone.

Dr. Val: I see.

Dear readers of Science Based Medicine, Mr. S’s website had millions of members, and he was absolutely convinced that he was doing them a great service. This is what our patients are exposed to on the Internet – so I thought you should know about it. Of course, my utter horror was dimly perceived by Mr. S as the usual “narrow minded physician” perspective. We doctors are really just suppressing truth and holding people down aren’t we?

I attended the Health 2.0 conference in San Francisco last week, and was not surprised to hear a representative from healthcentral.com extolling the virtues of community-generated content. His example of its value? A member suggested that her breast cancer might be related to her former habit of carrying her cell phone in her bra. She suggested that her observation could lead to discovering the “true cause” of breast cancer.  And what evidence did the healthcentral.com representative offer to demonstrate this comment’s value? A long list of responses. Many people were responding to the user’s observation, therefore the woman “must be on to something.”

Now please don’t get me wrong, I do believe that there is a place for community-generated content in healthcare. I think that it’s wonderful when patients help one another to find the services they need, and offer support along their journeys. But when medical advice is essentially being offered by people with no medical background, and when wild urban legends are born in the setting of fear and ignorance – there is much more harm than good being done.

That, my friends, is the view from Internet Consumer Land. Democratized knowledge does not equal democratized expertise. Let’s redouble our efforts to explain to our patients why these services are dangerous. Of course, I know that the onslaught of ill-conceived and misleading health tools and services will not abate. Because basically, there’s a demand for them.

Posted in: General, Health Fraud, Humor, Public Health, Science and Medicine, Science and the Media

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17 thoughts on “Knowledge Versus Expertise: The View From Consumer Land

  1. adiemusfree says:

    Tail wags dog huh?
    It’s not just doctors who are ‘narrowminded’, it’s ANYONE who uses science to justify a position or opinion…
    It’s what makes me worry when we are told to follow ‘client-centred’ practice – if the client doesn’t like what we say (lose weight, stop smoking, get off the couch and you might feel better) then it’s not popular. In chronic pain management, recommendations to stop seeking useless investigations or repeated injections or surgeries are met with ‘but that’s not client-centred’ (they want massage, herbal remedies and crystals, because ‘medications aren’t natural’).

  2. Peter Lipson says:

    Thanks, Val. It’s something I see all the time on the internet and in the office—someone goes to Google U and thinks they have the answers that I’ve somehow missed after all my silly education.

    There’s a reason we have experts—we can’t all know everything.

    Hey, let’s start a website to figure out how to best build a bridge. Then we can test it! (Mr. S can go first).

  3. Fifi says:

    adieumusfree – It is possible to address meaning and be client centred without lying, or at least so it seems to me. Often chronic pain patients are experiencing a rupture in meaning and identity – not only socially because they’ve lost their agency and power in the world due to injury or pain, but also on a purely physical ideation and navigational level due to the mind’s image of the body in space, not to mention the psychological sense of self in relation to oneself and other people.

    Does being client-centred necessarily mean doing what they want? Isn’t it more client-centred to provide what they need? One can address the psychosocial aspects of pain behavior without lying to the patient or even negating their religious belief system. If one listens to a patient intently, not just what they say but what they mean, it’s often quite easy to discern that what they’re getting out of a seemingly useless ritual or practice. This can then be replaced with a healthier habit/ritual and belief if that’s needed or useful, and the patient is capable. The reality is that one does need to work within a patient’s limitations – whether they’re physical, social or psychological – if one is going to treat that person as who they are and what they specifically need.

  4. Val Jones says:

    Please note a correction in this post: at the Health 2.0 conference I attended a panel discussion about online social networks. The panel included:

    * Daniel Palestrant, CEO, Sermo
    * John DeSouza, CEO, MedHelp
    * Bill Allman, GM, HealthCentral
    * Ben Heywood, CEO, PatientsLikeMe

    The breast cancer/cell phone comment was made by Bill Allman of HealthCentral, not Ben Heywood of PatientsLikeMe. I have made the correction directly in this blog post. Thanks.

  5. overshoot says:

    Can we compromise?

    I’ll use the Internet and other sources to learn enough of the language and some of the landscape so that I can ask questions and understand the executive summary answers. (And “questions” does not include “rhetorical questions.”)

    After that, there’s a reason I pay you people, and it’s the same one I would expect you to apply if you were employing me in my field of expertise.

    I’ve been with $PRIMARY_CARE_PHYSICIAN long enough that he is quite happy to hand me some search terms and trust me to do my own digging, knowing that I’m only looking for information and won’t be acting on it without checking back with him — saves lots of time.

  6. adiemusfree says:

    Fifi – yes, it’s entirely possible to be client-centred without being client-directed. At the same time, it takes considerable strength to gently but firmly challenge the beliefs and wants of a person who would dearly love to have his or her pain removed ‘naturally’ (or using meds!) when persistent pain is present.

    And when healthcare providers themselves are uncertain about whether it’s OK to persist with activity despite pain, the chances of misguidance through ignorance or subassertion are quite high.

    There is nothing like an upset and angry person saying ‘you made my pain worse’ to make some healthcare providers backtrack. Think of the number of MRIs that are done for acute low back pain ‘because the patient wanted it’. I think client-centredness means considering the long-term effects of choices made, but some practitioners respond much more to immediate distress without being fully aware that this is what’s happening.

    An informed patient means being informed not misinformed – that’s partly why there are some great sites that ‘interpret’ scientific findings into lay language, but at the same time things that have great marketing, provide immediate relief, and are ‘quick fixes’ have way more sex appeal than ‘time to learn self-management’.

  7. Actually, if patients with diabetes walk their dogs briskly for an hour every day, they’re getting a significant amount of exercise, which in fact is the best thing they can do for their disease (along with limiting their dietary intake of carbohydrate.)

    I agree completely with you in principle that “data” is not the plural of “anecdote”, and that random collections of individuals’ experiences with various treatments is worse than useless. Unfortunately, by sheer coincidence, that one example given about diabetes is actually pretty good.

  8. yeahsurewhatever says:

    In the interests of full disclosure, I’ve quoted Dr. Jones’ jellybean scenario as an intro to this same topic that she’s now quoting me as an intro to.

    Another big problem with websites like those of “Mr. S” is that apparently they are a major draw for what Marc Feldman has called “Munchausen by Internet”. Since it is physically impossible to receive medical treatment over the internet, the prospective patient instead comes seeking sympathy. If the easiest way to get it is to exaggerate their illness, or even manufacture one out of nothing, then what does it matter to them? There’s nothing inherently wrong with seeking sympathy, of course, but it’s stunning how often people opt to achieve it through deception when they’re given the tools to do so.

    Asperger’s syndrome is a condition that seems to live primarily on the internet, where the exceedingly vast majority of its “diagnoses” occur. Of course by “diagnoses” I mean a group of people getting together and deciding that they have Asperger’s syndrome, primarily because they want to self-identify in that way, for whatever reason. Is this harmless clique behavior or does it illustrate a growing problem? For all the accusations that people throw at doctors for “overmedicalizing” certain states, it seems that patients themselves are eager enough to do it if given half the chance.

    Another example that I found recently is a very elaborate one revolving around a girl in Canada posting “on behalf of her brother”, who she claims is slowly dying of an occupational exposure to heavy metals, and is “pleading to the whole internet” for “help”, since apparently something about the case is beyond the ken of all medical science. What struck me is how amazingly elaborate the whole thing was. This girl had constructed a whole website devoted to it, with literally dozens of scanned papers allegedly documenting her brother’s case. Most of them were utterly meaningless random papers, on the order of insurance claims, affadavits, accident forms, and the like. Even the ones that could reasonably be judged to be real and medically relevant didn’t really explain or demonstrate anything. My first suspicion about this affair was not so much Munchausen as malingering, because there apparently was some sort of insurance angle, and it occurred to me that it would be an impressive display to give to someone while simultaneously threatening to sue them for spurious damages.

    I’m nobody to cast conclusive judgment about the validity of the girl’s claims, but that really cuts to the center of it: who is? Nobody, from the vantage of the internet. And is there any context at all in which it would be appropriate to seek out random feedback from the internet at large, even if it’s a real case? I say no. The medium is fundamentally unable to furnish what she claims to be looking for.

  9. yeahsurewhatever says:

    “Actually, if patients with diabetes walk their dogs briskly for an hour every day, they’re getting a significant amount of exercise, which in fact is the best thing they can do for their disease (along with limiting their dietary intake of carbohydrate.)”

    It’s nice to try to pull good out of bad, but as a point of fact the advice was not “exercise”. It was, specifically, “dog-walking”. To be interpreted as literally as the person reading it wishes.

  10. David Gorski says:

    Asperger’s syndrome is a condition that seems to live primarily on the internet, where the exceedingly vast majority of its “diagnoses” occur. Of course by “diagnoses” I mean a group of people getting together and deciding that they have Asperger’s syndrome, primarily because they want to self-identify in that way, for whatever reason. Is this harmless clique behavior or does it illustrate a growing problem? For all the accusations that people throw at doctors for “overmedicalizing” certain states, it seems that patients themselves are eager enough to do it if given half the chance.

    Whoa.

    That’s a whale of an assertion and a gross generalization, with no evidence to back it up. So, the first question is:

    What evidence do you have to back this up?

  11. Please keep in mind, yeahsurewhatever, that parents of Asperger children read this site. Are you suggesting our kids, at preschool age, got together on their tiny little XO laptops and decided on the internet to self-identify as having Asperger’s syndrome? I wonder what the diagnosing psychiatrists, developmental pediatricians, neurologists, and school-system psychologists would have to say about that?

  12. Fifi says:

    I get what yeahsurewhatever is saying. I’ve chatted online with a number of people who are convinced they have a thyroid problem or some disease that can’t really be treated (the holy grail of hypochondriacs!) even though they’ve never been tested or diagnosed.

    The choice of Asperger’s is a poor one though for a number of reasons (though I have no doubt there are people wrongly self diagnosing with Aspergers). The first reason is that a lot of adults with Aspergers actually find the internet to be a much easier way to meet and talk to people (for rather obvious reasons) so there actually are a lot of people with Aspergers online. The second is that I’m pretty sure a lot of people with Asperger’s who are high functioning adults in their 30s and 40s never got diagnosed as kids or as adults (I know quite a few people who show all the symptoms of Asperger’s but were never diagnosed, they were and are just considered a bit weird and “artistic”).

  13. mike stanton says:

    Asperger’s syndrome is a condition that seems to live primarily on the internet, where the exceedingly vast majority of its “diagnoses” occur. Of course by “diagnoses” I mean a group of people getting together and deciding that they have Asperger’s syndrome, primarily because they want to self-identify in that way, for whatever reason.

    Do you have any links to these online “Asperger” wannabes? Since my son was diagnosed with Asperger’s Syndrome (by two clinical psychologists during a day long assessment process) I have met many autistic and Asperger’s adults on-line who are knowledgeable about their condition and the source of valuable insights and information which they share with parents of diagnosed children like myself.

    Some are self-diagnosed. Some were diagnosed by clinical experts. Many of those that I have met on-line are also active in local and national autism organizations in the off-line world. A good place to meet up with some of these people is the Autism Hub or the the I exist campaign.

  14. joseph449008 says:

    Asperger’s syndrome is a condition that seems to live primarily on the internet, where the exceedingly vast majority of its “diagnoses” occur.

    @yeahsurewhatever: Do you have evidence that most people calling themselves Asperger autistics are (1) almost always self-diagnosed, and (2) that the self-diagnoses are inaccurate?

    I doubt it, because I know about many of those people you talk about, and I’d say most of them are not self-diagnosed. And it’s improbable people would be calling themselves autistic just for the heck of it. It would be akin to someone calling themselves a homosexual without being one. Why do it? And yet, homosexuals are not required to have official papers to be able to call themselves homosexuals.

    It’s true, though, that adult autistics are often *undiagnosed* or diagnosed with something else. This is a bit different to what you’re saying. Read, for example, about the latest research by Professor Baron-Cohen of autism at Cambridge University. They find that about 1% of a pool of 800 or so students are autistic (and a good guess is that none were previously diagnosed).

    So the premise is really that adults calling themselves autistic aren’t really autistic because autism is supposed to be rare in adults. But it’s a completely false premise. Autism is common, but often missed.

  15. Catherine says:

    The correct use of Internet medical information should be to help the patient ask the right questions regarding his or her symptoms and concerns when visiting a physician.

    Knowing, ahead of time, that he/she might have condition X and that drugs A, B and/or C may be offered, allows a patient to research the risks and benefits of the medication(s) before accepting a prescription should that condition be diagnosed by the doctor.

    In my experience, physicians will ask about allergies to medications and try to avoid dangerous interactions with medications already taken, but they do not have or take the time to discuss more than the most common side- effects. In fact, some seem to think that mentioning side-effects insures that they will occur.

    While patients should read the information that accompanies all prescriptions, the format is often so tiny that it is tedious, at best. Also, once read, it is often discarded and side-effect can show up days or weeks later. Sadly, this often occurs at night or on the weekend. Turning to the Internet can offer reassurance that it can wait or speed the patient in seeking emergency care for a dangerous situation.

    Any physician who is insulted by a patient asking if the problem could be something they read about, wherever they found it, should rethink his or her attitude. Most of us are not “shopping” for a disease. We are in pain or think that something is not right with our health. We want to rule out the worst, relieve the discomfort with minimal damage and return to the more interesting business of living our lives.

    Regarding Asperger’s. If it had not been for an Internet parenting website and chat room, our 24 year old daughter would never have been diagnosed (at age 15) and would not be the college graduate (with honors) and fully employed taxpayer she is, today.

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