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Patient Empowerment Has The Potential To Be Problematic

Let me say first that I am a practicing primary care doctor who is very much focused on patient centered care.  Though I cannot go back to being a patient who is unaware about what a doctor does, the terminology she uses, or what the importance of certain test results are, I can empathize with the overwhelming amounts of information, challenges, and stressors patients and families can have in navigating the healthcare system to get the right care.  This is the reason I wrote my book.

However, over the past few months I’ve noticed a particularly disturbing trend.  Patients are not consulting doctors for advice, but rather demanding testing for diagnoses which are not even remote possibilities.  A little knowledge can be dangerous particularly in the context of little to no clinical experience.  Where many patients are today are where medical students are at the end of their second year – lots of book knowledge but little to no real world experience.

More patients are becoming the day traders of the dot.com boom.  Everyone has a hot stock tip, only now it is “be sure to ask your doctor for this test” or “ask for this medication because it is the only one that works”.  Everyone is an expert with his own suggestion on what should be done.  If a medical expert, like a doctor, weighs in and does not agree, then there is a set of patients and doctors who begin to argue that these doctors are out of touch or arrogant.

Hardly.

I certainly agree that many doctors frown upon their patients doing research online.  I disagree with my colleagues.  I’m all for patients being partners in their health as long as when they research they also go to reputable websites, like the Mayo Clinic or Kaiser Permanente, and also give equal weight to my medical advice.  Ultimately, patients should be more knowledgeable about their health and engage not only with doctors, but with family and friends as health does not begin with doctors, but in households and communities.  However, today’s world is increasingly polarized due to the ability to gather information and find opinions of like minded people quickly and easily.  A patient researching information can unwittingly blind themselves into believing that a medication, a treatment, a test, or a diagnosis is the only one that explains their symptoms.

Many of the patients who Google their symptoms, do cursory research, and are so convinced that they have a particular problem and need a particular solution are the group I worry about the most.  They want to see a specialist for a problem adequately handled in primary care.  They want a branded medication when a generic medication works equally as well.  They want CT scans and MRIs for migraine headaches or sprained ankles when a generation ago, doctors and patients believed diagnoses based on common sense.  They decline vaccinations for preventable illnesses like pertussis, whooping cough, because they are healthy and don’t want “chemicals” even though the state they live in had the worst outbreak of pertussis since 1955.

With more Americans paying for their health insurance through higher copays for doctor visits, medications, imaging, and treatment, it is understandable that they want more information and are seeking it.  What is particularly troubling, however, is much like the day traders of years ago, many are bypassing experts for some advice and consultation.  Indeed a decade ago many ridiculed financial guru Warren Buffet for failing to understand the new world and being a dinosaur.  Principles of the past no longer applied.  (Of course, financial principles remained – you do need to make money to be an ongoing company).  As a front line doctor, I’m seeing the same phenomenon in health care.  Doctors still clinch the right diagnoses by talking to and then examining patients.  Skipping directly to lab work or imaging often gets the wrong answer.  Sometimes there is no test or imaging study that can get the diagnosis.  Yet somehow if asked, patients retort, “I don’t have money to see you, I’d rather spend the money on the test or medication, so can you order it?”

Like the day traders of a decade ago, these individuals have the illusion of control or mastery.  Only later do they discover when the results are normal and the problem remains that being an expert and having the ability to take in information, process it, and then come up with a plan is harder than it looks.  (Dr. Lisa Sanders, whose New York Times series Diagnosis was the inspiration for the television show House, M.D., has excellent patient cases which challenge the public on getting the right diagnosis).

That is not to say that there are not patients who are indeed experts.  The individuals who are leading the empowered patient movement often know a lot about their diagnoses and treatment options and have mutual respect from their doctors.  Enlightened doctors realize that they cannot know it all.  I would hope and believe that empowered patients also recognize this inherent problem in themselves as they also cannot know it all either.  It is the rich discussion and collaboration which occurs when both groups are on relatively equal footing in terms of knowledge that the answers, solutions, and treatment plans are far better than if only one side or the other led the conversation.  Those patient experts probably can and have identified their condition when they read it in Dr. Sander’s column.

Who would have guessed that the day traders of the past would now appear as patients?  Funny and sad how history repeats itself.  The difference is unlike money, the stakes are significantly higher when it comes to health.

Not sure what to do when you have a problem?  It’s ok to research online, but then have an open mind when talking to your doctor.  If your doctor does not want to listen, then find another one.  Be sure, however, as you research and listen, that you do not become a day trader.  Indeed, if not done correctly the consumer driven health care movement has the potential to be equally as problematic as the retirement planning and investing movement a decade ago.

*This blog post was originally published at Saving Money and Surviving the Healthcare Crisis*


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3 Responses to “Patient Empowerment Has The Potential To Be Problematic”

  1. Nice piece, Davis. I agree with you on pretty much every point, however – there is a problem that you don’t address: that quite a few doctors give patients the wrong diagnosis, and medical errors are all-too common. I’ve been fairly horrified recently by personal tales of woe from many different friends. (The smoker complaining of shortness of breath who was assumed to have COPD when he was in A. Fib, the mom whose daughter almost died during a routine medical procedure when given an overdose, the man who’s been on a medication for years that has long been proven ineffective for his condition). Proactive patients don’t wanna “be that guy” who gets the bad medical care. I don’t blame them. So… although I think self-diagnosis is foolhardy for lay folks, I think that second opinions might not be such a bad idea. ;-)

  2. Trisha Torrey says:

    You make some great points about patients jumping to conclusions based on information they are sourcing themselves, Dr. Liu.

    But the idea that patient empowerment can be problematic is ludicrous. That’s like saying that prayer is problematic if we ask for the wrong things.

    The scenario you describe, where patients are demanding tests for problems they don’t have, doesn’t result from the misinformation or disinformation they have found. It comes from the fact that they don’t trust that they are getting the information they need from their providers. They would not be seeking alternatives if they felt as if their symptoms were being addressed correctly to begin with.

    Are patients finding bad information? Of course they are. Are they often misguided in how they approach their symptoms and fears? Absolutely.

    But patient empowerment isn’t about demanding unnecessary things. Patient empowerment is about partnering and participating in our care. Just like in a marriage, it takes both parties’ investment of 100% to make it work. And just like in a marriage, if one partner isn’t investing 100%, the other partner must take up the slack. We both know that only works for a short period of time. When patients get tired of their provider-partner not doing his/her part, they will seek alternatives – whether that means “demanding” tests, or finding another provider.

    Please don’t be one more of those doctors who blames their patients for their own failures as providers. It’s a little like a wandering wife blaming her husband for the affair she’s having. It solves nothing.

    Instead, guide your patients to good, solid, credible and reliable information – then discuss with them the pros, cons, positives and negatives of the questions they ask and the information they find. That’s the partnership that will be most satisfying for both parties.

    Trisha Torrey
    Every Patient’s Advocate
    http://patients.about.com

  3. Davis Liu, MD says:

    Hi Val, I completely agree with you. Second opinions are often an underutilized resource to help patients get the right care.

    Trisha – I think Val captured the essence of the piece perfectly – Patient Empowerment “Has The Potential To Be Problematic” – I have never said it is problematic and my track record and opinion pieces are consistent with that. I noted in my piece that I disagree with colleagues who feel patients should not use the internet to do research.

    I also feel that patients who use the internet to justify their point of view without weighing the evidence carefully from doctors put themselves at harm and potentially others (anti-vaccine movement and now the increasing number of preventable childhood immunizations – California had the worst outbreak of whooping cough since 1955 in the summer of 2010. Now the state has mandated effective July 1, 2011 all 7th to 12th graders must be immunized to attend school).

    A completely agree it should be a partnership, however, forward thinking doctors who agree with patient engagement should not be labeled, “one more of those doctors who blames their patients for their own failures as providers” because I suspect there are many more doctors working hard and quietly behind the scenes to ensure these failures are eliminated than is often acknowledged.


    Davis Liu, MD
    Author of Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America’s Healthcare System
    (available in hardcover, Kindle, and iPad / iBooks)
    Twitter: davisliumd

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