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Does the Wisdom of Crowds Rival the Wisdom of Your Doctor?

June 1, 2010

Two pieces in Sunday’s paper got me to thinking.  The first, in the Sunday Globe Magazine was by Douglas S. Brown,  Vice President at UMass Memorial Health Care in Worchester, MA.  This interesting piece resonated with me in that it speaks of how the U.S. healthcare system, at all levels, has displayed arrogance and disinterest when faced with the reality that we provide low value healthcare compared to most other industrialized countries.

There is lots there that we could debate, but one passage in particular struck me as it relates to the adoption of connected health.  Brown cites a 2008 safety alert* on physician attitudes toward working with patients and other healthcare workers, noting that “reluctance or refusal to answer questions, return phone calls or pages; condescending language or voice intonation; and impatience with questions” sends an unmistakable message: I am better than you. Who are you to question me?

The second piece was in the Sunday New York Times Business Section, by Natasha Singer, entitled “When Patients Meet Online, Are There Side Effects?”.  Singer writes about two Internet-based efforts in healthcare that are truly disruptive. I admire them both greatly.

One is Patientslikeme.com and the other is Curetogether.com.  The controversy that Singer writes about is the tradeoff that patients make when they join communities like Patientslikeme, where consumers share personal information so that others can compare and learn together.  Of course, Patientslikeme has been transparent from the very beginning, stating that they reserve the right to offer participants’ private health information (in aggregate and deidentified) to outside firms as market research.  This is not unique in the world of social networking, but somehow when applied to the very private world of health information, it raises concerns in some individual’s eyes.  My interest, however, is in the very notion that two communities (I’m sure there are others) like this can be successful despite any perceived risk that personal health information will make it into the wrong hands.  To me, this indicates a frustration level with the health care status quo that should be listened to.

I’d like to tie these two together by pondering why Patientslikeme and Curetogether got started.

I’ve heard both founders (Jamie Heywood of Patientslikeme and Alexandra Carmichael of Curetogether) speak about their disenchantment with the health care system as offered. In both cases, the question being posed is whether the wisdom of crowds is more powerful that the wisdom of your physician. I expect that if we physicians were listening more attentively for for clues that patients feel they aren’t being heard as opposed to complaining about returning calls and pages or griping about those who question our authority, neither of these founders would have felt the need to create their respective firms.   My gut tells me that the right answer is somewhere in the middle.

Patients live with their illness all day long, 365 days a year, and if they are careful observers, they will know infinitely more detail about their illness than their physician. The physician adds context, by way of expertise from domain level training, experience and judgement.

Really this is not a new debate.  I’m paraphrasing but the revered diagnostician Sir William Osler was known to counsel medical students, “Listen to the patient.   He’s trying to tell you what the diagnosis is.” We went through a phase in healthcare where we trained a generation of physicians who paid more attention to the imaging, lab tests, ecg’s, etc., than the patient history. It’s no wonder we’ve got patients wondering if  they can do a better job on their own.

Connected health will compound this challenge.  By way of example, lets look at blood pressure.  Hypertension is currently managed based on a handful of readings taken in the doctor’s office 2-4 times a year.  When we’ve explored Not surprisingly, then, physicians react in a variety of ways to the concept of frequent (anywhere from 3 per week to 3 per day) home blood pressure readings stored in a log to be used for clinical decision making.

On the one hand, my colleague, Dr. Richard Grant, is amongst the most progressive in that he’s designed a study to ask the question of whether patients who take home blood pressure readings, when armed with a series of algorithms, can make their own medication adjustments. On the other end of the spectrum, I hear from some doctors, “please don’t give my patients home blood pressure units.  It will only result in confusion on their part about which readings are meaningful and more calls to me. I don’t have the time to answer all of their questions.”

That comment brings me back to Douglas Brown’s article.  How can we possibly have twisted our professional thinking to believe that fewer data points are better in solving a clinical problem?  It is direct evidence of the hubris that Brown refers to.

Still, there is a role for domain experts to guide thinking around healthcare. This is why I get so many requests from investors to look at new healthcare start ups. It is also why all healthcare companies have medical director positions.  There is something unique and valuable about a physician’s training and perspective.

So what is the answer?  Would communities like Patientslikeme and Curetogether be more powerful if they had physician involvement? Would we even need them if we healthcare providers took a generous dose of humility?

What do you think?

9 Comments leave one →
  1. June 1, 2010 3:03 pm

    Nice piece and reflection on the question! IMJ, it must be an engaged and functional partnership enabled by mutual respect.

    Lets do away with the marginal paternalism cloaked in the ‘one up’ I’m better than you detached physician, while honoring the role of the patient as participant in the health care process. Both are needed to improve health status while preserving the sacred nature of the physician’s shaman energy.

  2. June 2, 2010 6:21 am

    Hi Joseph,

    Thanks so much for this thought-provoking post! It’s true, patients are experts on their own bodies and diseases, and it’s also true that physicians can be helpful guides. My own 10-year story with poorly understood chronic pain was a series of frustrations, not helped by some doctors, but eventually cured through self-tracking and a very helpful partnership with a provider who was willing to take the time to listen to what I had discovered and work with me to solve the problem together.

    I’m not advocating doing away with doctors – just giving patients the tools for their own self-knowledge to augment and facilitate their health care interactions. I’d be interested in hearing your thoughts on how physicians might participate or join in the conversation at CureTogether – with proper transparency, of course.

    Alexandra Carmichael
    Co-Founder, CureTogether

  3. Chris Wigley permalink
    June 16, 2010 7:25 pm

    I am a member of several internet based patient support groups for people with COPD. A significant proportion of the members that I am aware of were diagnosed too late and given varying poor advice and poor choice of medications by their doctors (compared to accepted treatment guidelines). There are some truly wonderful doctors out there (and I have been very lucky in my own doctors) but there are also a lot who simply do not practice good medicine a lot of the time.

    I have seen terrible advice to members from other members, but it is invariably counterbalanced by excellent advice from others. This is what happens in a support group, but who is there to counterbalance poor advice from a doctor? Especially when conveyed with the “unmistakable message: I am better than you. Who are you to question me?”

    • June 18, 2010 7:59 pm

      First, while I appreciate the article, I think your title runs counter to the point you seem to be making. Members of online communities are certainly not there looking for consensus to create some kind of gestalt-wisdom. The real question isn’t about ‘Physician wisdom versus crowd wisdom.” It’s about information resources: physician versus community.

      Second, yes, the cultural divide perpetrated by doctors–by society concerning doctors–is certainly a sticking point. As Trish Torrey points out in her new book, “You Bet Your Life,” we call our physicians “Dr. Surname”; they call us by our first names. I’ve had a few, mostly younger doctors, who called me “Mr. Grace.” They’re the exception. The system has a feudal feel to it, and I believe that is a deliberate effect. Physicians want us to be malleable, to accept their judgments with a polite “Yes, Dr.” Seriously, do your patients call you “Joseph”?

      Third, yes, I think most patients want the ability to verify our doctor’s decisions. I read and hear stories all the time of patients demonized by doctors for bringing in internet-derived information. We know not everything online is gospel, but we also know that some of it is valid.

      Some patients want a role in their physicians’ diagnostic decisions. Some just want to be able to see their records–including lab results–without going through a third-degree or paying out the nose. No one wants a magic crowd wisdom to combat the physicians, though. We still want the expertise of the physicians. In some cases, we want their wisdom. In any case, we want your respect.

      • June 20, 2010 10:32 am

        Very thoughtful analysis. Indeed I don’t address patients by their first name unless they grant me permission. also, some of them do call me by my first name, especially if its a longstanding relationship.

  4. Dennis (Investigator/Negotiator) permalink
    June 20, 2010 2:23 pm

    I have no objection to a Doctor using my first name. Seriously, though, if someone asks, “May I call you ‘Dennis’?” I expect the next response after my yes to be, “Great. Call me Joseph.” I’m glad to hear thatvyour position on forms of address is so progressive. It astinishes me when I see the opposite. My wife was seeing a very young doctor who started the session adressing her as Kathy. When my wife responded to a question with, “Well, Geoffrey,..” he interrupted her to correct her, “That’s DOCtor Lloynds. Please, continue.” I was tempted to walk out. Instead, at the end of the appointment, when DOCtor Lloynds suggested a two-week follow-up, Kathy said, “That won’t be necessary. I’ll be looking for another physician. I don’t think our priorities are aligned.” She and I hadn’t discussed this decision, but I knew exactly why she’d made it. Ironically, I don’t think Dr. Lloynds knew what she was talking about.

  5. Ann permalink
    December 21, 2012 9:32 pm

    The internet is definitely a better doctor than any of the doctors I’ve been to. Don’t try to fight against it. Adopt it and use it into your practice.

    I like the idea of both curetogether and patientslikeme, but both have lots of room for improvement.

    I’d love to see a massive data-collecting site that asks people questions about their health (okcupid or 20q.net style), and then finds correlations between all the data that might not be noticed by human researchers who focus on only one condition or hypothesis at a time.

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