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On Doctors, Patients, and the Internet: An Analogy

March 15, 2011

This a topic that bears further discussion later, but I wanted to share this analogy I came up with after talking to a friend who experienced hostility when asking her doctor about information found online. I posted it to Facebook a while ago, but wanted to put it here where I will be able to find it again, too.

Warning patients away from “the internet” because some sources are bad is like telling patients to avoid all medications because some/most would be inappropriate or dangerous for that patient. Both miss opportunities to educate, collaborate, and improve care.

People – including patients! – use the internet. Period. It’s my opinion that doctors and nurses who immediately scoff at any mention of the internet – rather than appreciating the wide web of information, good, bad, helpful, worthless, dangerous, and in between – are more interested in being gatekeepers and authority figures than in helping patients understand their conditions and get good care.

I feel like there’s a teenagers/sex metaphor in here, too. Blanket prohibitions and authoritarian grandstanding do nothing but put a wall between people and what they need to know to be safe.

I would love to hear your experiences with health care providers and their attitudes toward information in the comments.

13 Comments leave one →
  1. vesta44 permalink
    March 15, 2011 7:37 pm

    I was taking Cymbalta and relafen at the same time, for a couple of problems – I have fibromyalgia, depression, and arthritis, my doctor said those two drugs would help with all of those problems. After 6 months of taking the two drugs, I started having vaginal bleeding (I’m 57 and 6 years post-menopause). Her first thought was uterine cancer and doing an endometrial biopsy (which came back normal). I googled the interaction between the two drugs, and vaginal bleeding was one of the side effects. When I asked my doctor about this, she pooh-poohed the idea (because I found it online on drugs.com) and said that couldn’t possibly be the problem. After 2 1/2 years of off and on vaginal bleeding, for which she had no idea of the cause, other than cancer, she suggested another biopsy and an ultrasound. I never heard from the gyno who did the tests what the results were, I had to call his office to find out, and all I found out were the results of the biopsy, nothing about the results of the ultrasound (and this worries me because my mother fought ovarian cancer for 10 years before it finally killed her). Needless to say, I quit taking the Cymbalta and the relafen, and the vaginal bleeding has almost stopped (and the relafen didn’t do anything for my pain anyway, so was useless). Any time I have ever told my doctor that I found something online, she has basically said that information was totally wrong, but didn’t have any reasons that it was wrong.

    • March 16, 2011 8:02 am

      Thanks for your comment – that is similar to what I have heard from others, that the minute they say they have brought some information they found online and have questions, the provider shuts down and scoffs. Some of those providers get surprised when what the patient really has on hand is a Cochrane or AHRQ review, JAMA article, ACOG statement, etc.

  2. March 15, 2011 8:20 pm

    I experienced the early-internet version of this. I was dealing with a chronic health issue that was, at that time, beginning to be treated with a non-standard medication with excellent results. I heard of this in an online support group and went to the local university’s medical library to do my own research. I took copies of the articles (all from well-known, mainstream journals such as JAMA, New England Journal of Medicine, The Lancet, etc.) to doctors asking them to prescribe for me, or at least to review the research and discuss why or why not it would be an appropriate treatment for me. I saw 4 or 5 physicians who dismissed my research without even reviewing it because of the paternalistic view that since I wasn’t a doctor I must not really have any idea how to do medical research. I finally took my research to my family practice doctor who read the articles I had found and called me at home on her day off to discuss my options.

    15 years later my “experimental treatment” is now the treatment of choice for my disease. I continue to have a collaborative relationship with my family practice doctor, and I continue to have no use for providers who won’t consider the information that I might bring to the doctor’s office with me.

    • March 16, 2011 8:12 am

      Thanks for sharing this – that collaboration is so important, I think, and is exactly what gets shut down when providers respond negatively without even reviewing the information.

      I help family members and friends get health information sometimes, and I’m always delighted when they say they brought the (good quality) information to a doc, had him or her start lecturing them about “the internet,” and then they played the, “Yeah, I know, but my friend/daughter/whatever is a medical librarian at Reputable Institution, and I trust her to point me to good information.” Then the providers have to find another way to not deal with it if they’re not going to engage even at that point.

      But not everybody has the luxury of a friend who is a medical librarian with a little free time, and they shouldn’t have to in order to have their questions/concerns addressed.

  3. Greg permalink
    March 15, 2011 9:30 pm

    I don’t think doctors are hesitant about internet medicine because of some paternalistic need to be gatekeepers – there is a lot of crazy pseudoscience on the internet, and I can imagine patients wasting hours of precious time with their doctors arguing over quack cures. For those like the above commenters, who understand the process of skeptical science, the internet has been a godsend. But for others, it’s a self-reinforcing echo chamber of the craziest garbage. An example is with this whole belief that vaccines cause autism. Again and again science has not found a link, but go search on the internet and you’ll come across site after site claiming vaccines do exactly this. Trying to convince an antivacciner otherwise is like trying to convince a religious fanatic of atheism – it’s next to impossible because the beliefs are no longer grounded rationally but emotionally. I can imagine the frustration pediatricians have when patients bring out “studies” again and again in order to refuse vaccines. It’s not that the internet is problematic (scientists use it themselves, remember), but the people who use it to reinforce their own dogmatic, a priori assumptions can make any serious scientist groan.

    And lest you think that the American public are smart enough or skeptical enough not to be taken in by the internet, remember that:
    -20% of Americans cant find America on a map of the world
    -25% think Barack Obama is a Muslim
    -Close to 50% (!) think the Earth is less than 10,000 years old

    • March 16, 2011 8:07 am

      There is absolutely a lot of incorrect information online. However, not all of the information online is problematic, and treating it as such – and treating patients who are seeking information about their own bodies and conditions as a problem – is a huge issue. If patients bring “studies” that say vaccines cause autism, or abortions cause breast cancer, or whatever it is that’s not correct, a preferred response would be for the provider to say, “Thank you for being concerned and trying to find out more. Those studies don’t demonstrate what you think they do, and here’s why…” Patients are also aware that medical science has been woefully wrong in the past, and so there is a real lack of trust there that I think engaging helps. Just responding that all info from the internet is garbage is actually a lie itself, and does nothing to help patients filter through the garbage. People don’t spring from the earth with information assessment skills, but just treating them like idiots for using “the internet” doesn’t help build those skills.

  4. Ashley Forsyth, D.O. permalink
    March 16, 2011 7:56 am

    I’m a specialist in internal medicine and I’ve practiced medicine for over 25 years. I’ve worked in primary care, emergency medicine and currently I teach in an academic hospital. I read many medical journals and subscribe to dozens of news feeds from trustworthy medical sources.
    However, particularly for unusual conditions or symptoms, my medical students, residents and I all do an internet search. True, there is a lot of garbage out there, opinion and speculation, but we also find much worthwhile and trustworthy information. No physician can possibly know everything, even in their specialty.
    A physician who ‘blows off’ a patient is making a terrible mistake. The motivation may be insecurity (perhaps the patient really does know something they don’t!) A smart physician stays open and listens. Patients who have lived with a rare disease for years often have expert knowledge that a typical primary care physician may not have for that condition. Doctors can learn from their patients, and should.
    Paternalistic behavior has no excuse. True, today’s doctors are generally overworked and they are booked with a new patient every 15 minutes, leading to frustration and impatience. None the less, they shortchange the patient and themselves when they are not open to listening and considering something new.

    • March 16, 2011 8:07 am

      Thank you for your comment and sharing your practice. I agree completely!

  5. Rebecca permalink
    March 16, 2011 10:01 pm

    I’m doing a medical billing and coding certification program now. My coding professor-who has done coding for over 25 years now-recommended looking at Medline Plus (which is run by NIH) as a good resource for finding information and videos of procedures that we might not necessarily be familiar with. It’s not bad information, it’s necessary information to make us better coders.

    • March 17, 2011 12:55 pm

      Glad you like MedlinePlus! I’m naturally very fond of anything coming out of the National Library of Medicine (part of NIH, as you note).🙂

  6. MomTFH permalink
    March 18, 2011 7:56 pm

    I think you could easily say the same thing about talking to real human beings. “They say..” or “I’ve heard…” can precede some of the most ridiculous, sometimes dangerous advice ever, and it can been given by real live people. Or, excellent information. Even some physicians give bad information!

    Any source should be examined with proper skepticism.

  7. March 23, 2011 5:12 pm

    I couldn’t agree more. Excellent advice or dangerous advice can be found anywhere. Doctors should appreciate their patients relaying what they’ve read or heard. It gives the doctor an opportunity to correct, expand or agree with the information.

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