the doctornet; being my own health broker

During a period of 3 – 4 years not so long ago, my partner and I each faced significant health challenges. During that time I learned the importance of taking the reins when it comes to my own health. The internet is a great source of knowledge, but still only one of the many items in the toolkit for healing and health maintenance. One concern is, how much of what we read on the ‘net can we trust? Another concern is, how best do we work with our doctors in relation to what we learn on the internet.

A while back I read a blog post by Lisa Neal Gualtieri, Adjunct Clinical Professor at Tufts University School of Medicine and Editor-in-Chief of eLearn Magazine. The post was entitled The Doctor as the Second Opinion and the Internet as the First. It gave me lots to think about, and I posted my thoughts as a blog comment after her post. I’d like to share my response with you by re-posting it here.

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As somebody who is a “broker” of her own health, I found your article to be interesting and supportive, yet some of the content surprised me. I’ve been under the apparently incorrect impression that internet literacy and health literacy have increased enormously, exactly because of the vast quantity of online resources available to us. So I was surprised to read that many of the 84% of us (if I were American, that is) who are using the internet to find health information and guidance are not using the results of our research as well as we might.

It seems odd to me that people “may be…overwhelmed, frustrated, confused, or frightened by what they find online.” If you’re going to become fearful, don’t read it. If you’re going to read it, remember that learning is a tool that can diminish fear. The more we know, the better armed we are. However, having taught adult students for years, I do know that there is a kind of fear of knowledge that is similar to the fear of the unknown. I also know from personal experience that the more I read online, the better I become at identifying and filtering out the dross.

I’m absolutely floored to read that “frequently the Internet-provided first opinion is not communicated to the doctor.” My goodness, if you’re going to do the research, why would you not use that education as a framework for the discussion with your medical professional? “Hey Doc, I recently read _____ and I’m wondering what you think of it?” or “I read this recent report about ____ and I’m wondering what you know about it and can you tell me more?” I’ve had some very rich discussions with members of my medical team, and at times they’ve even requested links or print-outs of the information I’ve mentioned. As your article points out, doctors don’t always have time to seek out today’s hottest topics in scientific and medical news, so if I read it, I’m surely going to ask them if they have if it’s relevant to my own health situation.

At the root of the problem, possibly, is that many of us were raised with the idea that Doctor Knows Best. (I’ve seen it also as Teacher Knows Best, a myth I work hard to destroy for my students.) You say that patients don’t mention their research to a doctor out of feeling disrespectful, or of appearing stupid, or of being perceived as a cyberchondriac. (Hey, good word; I haven’t seen that one.) I’d say to them, be proud that you’ve sought out knowledge, that you know some new words, that you have new things to ask about, and that you’ll now understand better what the doctor says. Speak your fears if you trust the doctor’s opinion; give him or her a chance to explain what you’ve been reading. Guaranteed – you’ll feel better for having voiced the fears.

You wrote, “Because the lack of health-literacy skills can lead to poor comprehension and retention of information during a doctor’s visit, many patients leave a doctor’s visit confused and ill-informed.” Well, that has been true through the decades and has little to do with the availability of internet information. I remember that my mother really thought doctors’ law was THE law, was frequently confused about what was said but ALWAYS followed their advice and “rules”, always felt that she hadn’t been heard properly or given enough time for her visits. If only she’d had the internet so she could find out more about the topics of her concern. Surely a patient who has read a range of material online stands a much better chance of being less confused and ill-informed, and more capable of focussing their discussion with the doctor?

I use my internet research as a first window to information, and carefully consider each source, each author’s qualifications, and how much the information agrees with other medical opinions I’ve read on the same topic. That is, I won’t find just one bit of information and stop; I’ll seek out a dozen and compare what they have to say. I suppose I seek a consensus of opinions, which collectively becomes my “first opinion.” Then I don’t “test” my doctor by staying silent about what I’ve learned to see if she comes up with the same ideas; I tell her what I’ve learned up front so that we both start from the same place in the discussion. It saves us time, rather than taking more time.

It’s ultimately up to us to take care of our own health. Our society doesn’t seem to be so good at that in general, given the continual rise in the incidence of dis-ease. But running to the doctor and trusting just that one opinion isn’t the way to make sure we have the best knowledge available about our own bodies, any more than is doing our internet research and then running to the doctor for a “second opinion.” Instead, we must use all resources available to us. As I’ve mentioned already, I have my own “medical team” – my GP; specialists from time to time (I always research those ahead of time so that I can request a referral rather than just being given one); alternative health care professionals (naturopathy, chiropractic, acupuncture, massage, yoga, nutrition advisors, and others). As I said, I’m my own health broker and I seek out the professionals I need, but I always do my own research first.

One thing you mentioned but didn’t emphasize in your article was that, “ultimately, anyone using a health website is trying to feel better or stay well.” That’s the key here. If we know more, if we seek health information even more than illness information, we’ll succeed in that goal. By the very nature of their practice and the fact that patients who see them are already sick, doctors by and large do not focus on preventative or holistic medicine. They only have time to treat the symptoms. In fact, my personal experience is that many of them tend to reject more holistic approaches, having had no training in herbal remedies, homeopathy, or a huge list of other alternatives. I don’t criticize doctors for this because I do see them as trained professionals with a focussed set of skills and knowledge. But I know that training is by necessity limited. I believe it’s up to me to complement what they know and do for me by adding to the mix my own willingness to research information from credible sources.

I couldn’t do without my GP, but my GP has been carefully chosen, after interviews of several. I make sure any new GP I accept and begin to trust knows about and is open to my holistic approach and understands that I also work with alternative practitioners. I make sure that every medical professional I see understands that my goals are continued good health and finding/treating the cause of a health issue rather than just treating current or acute symptoms.

As you say, we all have to recognize that personal health is a “shared goal” between us and our medical professionals. In our own self-interest, though, we must take on the majority role and do what it takes. This includes sifting through the results of our internet research with an eye to determining what’s reliable, what’s helpful, what’s not, what makes us afraid, and then discussing it all intelligently with our carefully selected medical resource people.

(Sorry for the length. I should have started with “don’t get me started!”) Clearly your article hit home with me, Lisa. Thanks for providing your thoughts and research.

http://lisaneal.wordpress.com/2009/02/16/the-doctor-as-the-second-opinion-and-the-internet-as-the-first/