More on “Health 2.0” and patient-generated online information

I got a number of interesting responses to my post on Susannah Fox’s brief speech.

Susannah’s work at the Pew Internet & American Life Project is really good stuff and I enthusiastically recommend reading all of it- but I gave her a hard time for elements of her remarks at the Health 2.0 (non-)conference in San Diego a couple weeks ago because I felt these elements were poorly reasoned or misleading. Susannah’s remarks probably bothered me more than they should have because I had the unreasonable expectation that she could do as well in a few spoken minutes what she usually does in longer-form writing.

In response to my kvetching, Susannah graciously posted the 2001 press release from the American Medical Association that she mentioned in her remarks and says of it:

I incorporated the AMA release into my remarks at Health 2.0 as an example of an organization that was slow to adapt to the new realities of the information marketplace…

Here’s an image of the section:

The text says:

6. Remember that the Internet cannot replace a physician’s experience and training.

Millions of Americans go to the Internet for health-related information, but people who use it to self-diagnose and self-medicate may be putting themselves at risk. Only your physician has the necessary experience and medical training to diagnose and treat medical conditions. If you have questions, trust your physician, not a chat room.

I think that it could’ve been written better, but that this is still good advice today. There’s nothing wrong with a patient doing research with reliable online sources and having that research inform the patient’s communication with healthcare providers, but trusting advice from a chat room over advice from your doctor is, without question, unwise.

Others have responded, like Gilles Frydman, Ted Eytan and
e-patient Dave. These responses have made clear that I need to clarify my position.

I do not believe and have not said that:

  • Doctors are always right (Dr. Haig, for example, is wrong on multiple levels)
  • Patients should not seek information outside their relationship with their doctors (I have a post category for consumer health information with a sizeable number of posts)
  • Patients should not seek information on the internet (see this post about the use of the term “cyberchondriac” in the mainstream media)
  • Patient support groups are without value (though they’re probably not as good for patients as they could be if they’re run by pharma companies)

There is no question that when one is facing illness (especially severe illness), it makes sense to seek information from any insightful source, including other patients. Some of the information available from other patients is nuts-and-bolts practicalMark Achler told me about a patient survey he was involved with while at Emmi Solutions in which patients who had sub-venous access ports in their chests were asked what advice they’d give to other patients who were about to have a port. Two notable suggestions: [1.] Female patients could take a black magic marker and draw the outlines of their widest bra strap so that when the doctor placed the port he could avoid having the bra strap be over it. [2.] Patients could being a pillow for the car ride home to protect the port from the shoulder strap. This stuff strikes me as gold (though I’d probably still check with my doctor before I did either thing)., other information is shared by patients fortunate enough to be receiving the best available care and passed to patients less fortunate who can press their doctors to pursue newer methods of treatment. That this (rightly) takes place isn’t new, the Web just makes it a lot more efficient.

But some patient-generated sources just stink (examples include iMedix and MamaHerb), and no amount of personal belief in the concept of the “wisdom of crowds” will change that. The AMA was right in 2001 (and would still be right today) that no online resource “can replace a physician’s experience and training.” They were (and remain) right to warn against trusting a chatroom over one’s physician. Self-diagnosing and self-medicating can and do cause harm (ask any emergency room healthcare professional).

Gilles, no bright physician is trying to “do to alone.” Every physician I know who has expressed skepticism about the efficacy and safety of online health information has done so out of concern of what is best for her/his patients. I don’t doubt that there exist shabby physicians who have knee-jerk reactions based primarily on fear about their place in a rapidly changing healthcare market, but I believe those are the exception- not the rule. Scolding physicians with unsupportable hyperbole (or making non-analogous comparisons of the AMA to the RIAA) will not prove an effective way to convince them of anything.

5 thoughts on “More on “Health 2.0” and patient-generated online information

  1. Well, there’s a lot to chew on here. Thanks for keeping the conversation open.

    > no online resource “can replace a
    > physician’s experience and training.”

    I think there’s a danger here of mixing our examples and ending up with apparently contradictory views on what are actually different questions.

    I say, there is no substitute for a good doctor’s skills in the art of medicine.

    I say, too, that (as the e-patient white paper powerfully establishes) no doctor can possibly keep up with all the relevant new information being published, even just the best journals, unless said doctor is in a sub-sub-specialty and is actually authoring some of that material, with blinders on the rest of the world.

    Those are two different questions. And in contrast to “no doctor can keep up,” e-patients and their “support crew” have all the time in the world to go deep on their sub-sub-specialty of 1.

    David, pardon if you’ve answered this before, but have you had a chance to read the white paper? It really turned my head around. Pretty quick reading, too.

    Personally, I wouldn’t get medical advice from “some chat room” full of unknown people any more than I’d get financial advice from a chat room full of unknowns. But remember, *every bit* of misleading information that I got came from well-trusted web sites. They, too, cannot do it alone anymore.

    I say, what we need is well-trained, trustworthy peer communities.

    I’m working on a draft e-patient bill of rights and responsibilities, and increasingly it’s coming down to empowered participation (“participatory medicine”). One aspect is empowered patients getting smart about digging up information, using it themselves for simple matters, and, where things get too deep, bringing it to the table with their smart expert doctors – and listening to what the doctor says.

    But that presumes you’ve got a smart expert doctor. Which brings us to…

    > no bright physician is trying
    > to “do to alone.”

    This is a sticky and sad one.

    You and I are out on the frontier, but I’m truly sad to say that if you listen in for a week on an ACOR listserv, e.g. the KIDNEY-ONC one that I used, you’ll see that in the real world, way too many patients are actually dealing with doctors who, by your criterion, would qualify as “not bright.” They have seriously outdated information, and/or they simply tell patients to just trust them – and sometimes get hostile when questioned.

    What are we going to do about those “not brights”?

    The only solution I see is to tell *everyone* that they have a right and an option to educate themselves, and to support them in doing so wisely. And I believe that’s the point where your view and mine converge. Agree?

  2. Dave, I don’t think we disagree on anything here.

    I only argued [1]that the advice from the 2001 AMA press release (“trust your doctor more than a chat room”) was and still is good advice and [2] that Susannah’s comparison of the RIAA to the AMA was a terrible analogy.

    You appear to agree on the first of those two points and have decided to disregard the second. That’s fine.

    But Gilles went off on a tangent and started arguing points I didn’t make. I had hoped that this post would clarify that…but it appears perhaps that it did not.

    We seem agree that some doctors aren’t as good as they should be and that every patient has the right (and more should exercise it) to self-educate and self-advocate. But haven’t these things always been true?

    But long before “”participatory medicine” and “e-patients”, smart healthcare consumers educated themselves and advocated for themselves.

    More than a bill of rights, we need more and better education and tools for health information literacy that will aid the patient in seeking out information and pursuing the best available treatment from the best available providers.

    I will read the e-patients white paper- it was on my list, but your suggestion moved it to the top. Thanks!


  3. I nothing to say about the RIAA thing – haven’t talked to her to see what on earth she was thinking. 🙂

    Re more & better education and tools, I couldn’t agree more. I don’t know where to start on that, other than waking people up. It’s a big question.

    Re “trust your doctor more than a chat room,” in this case I think the devil is in the possible interpretation. A lot of lay people I know would construe that as meaning “don’t go messing around online.” (Yes, I *know* that’s not what the AMA said.)

    Pls note, btw, I didn’t just say “bill of rights” – I said rights & responsibilities.

    —Hey, I meant to say, that fourth “I didn’t say” bullet is almost unparsable to me. Does it untangle to “support groups run by pharma probably aren’t as good for pts as they could be”?

  4. One more thing (boy do I say that a lot) … the issue of well-respected web sites being potentially harmful (or at best misleading) means that I’d advise a friend, “Trust a physician who keeps current on your condition, not a web site that might be very stale.”

    Then you run smack into how you can know who keeps current on your condition. Not to sound like a broken record, but I got that answer on ACOR.

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