Oct 30 2008
“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.
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