27
Mar
10

do patients need doctor navigators to use the internet?

In the March 25 New England Journal of Medicine Drs. Pamela Hartzband and Jerome Groopman of published an opinion piece titled “Untangling the Web — Patients, Doctors, and the Internet” in which they expressed a lot of concerns about how the internet is putting patients in touch with a lot of questionable information about disease and about how it is changing the doctor-patient relationship in an adverse way.

Since, overall, my views are about 180 degrees in the opposite direction, I’d like to quote some of their remarks and comment on them. (I recommend reading the full article so the context isn’t neglected.)

Information traditionally flowed from doctor to patient; the physician described the genesis and course of a disease and the options available for treating it. Often, pamphlets were provided to reinforce the doctor’s explanation and advice. The patient might then receive additional input from family and friends, usually in the form of anecdotes about people who faced similar clinical situations.

I can only say from my experience that the first sentence about information flowing from doctor to patient is pretty ideal. When I started working at the community level for a large national cancer organization in the ’70s there were doctors who not only didn’t explain the disease well but there were some who chose, on the basis of their judgement about the emotional frailty of the patient, not to tell some patients they had cancer. They’d tell a spouse or adult child perhaps. Fortunately, things have improved and, hopefully, the “don’t tell” practice has been replaced by informed consent. Still, I think for many situations the amount of information going to patients is limited by the short time allocated to face-to-face interaction with doctors. I am a Kaiser Permanente client. They have implemented email to doctors, online lab results, and an online information resource. The docs don’t give full explanations unless you press them on it.

Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make unsubstantiated claims — assertions that macrobiotic diets cure aggressive lymphoma, that AIDS can be treated with hyperbaric oxygen, that milk thistle remedies chronic hepatitis, and myriad other fallacious claims. Falsehoods are easily and rapidly propagated on the Internet: once you land on a site that asserts a false rumor as truth, hyperlinks direct you to further sites that reinforce the falsehood. Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. Doctors may be perceived as closed-minded, dismissive, or ignorant of “novel therapies” when they challenge such Internet rumors.

Firstly, there is absolutely nothing new about charlatans and doctors who have been peddling snake oil and gimmick cures for generations. Again, when I went to work in cancer control my organization had a major effort to combat “quackery.” Many, many cancer patients were getting all kinds of bad advice and misinformation from naturalistic health magazines and other sources. (For a thorough tour of the quackery hall of infamy, see Dr. Steven Barnett’s site Quackwatch.) People by the thousands were going to clinics in Mexico for cancer treatments no responsible doctor would perform. This was rampant decades before the internet. There was an epic, nationwide legislative battle over Laetrile, the marketing name for amygdalin from apricot pits. Despite the best efforts of medical and public health organizations, especially in California, Laetrile production was legalized in 27 states . The arguments about “freedom of choice” from the ’70s seem to have echoed down the decades and have turned up again in the rhetoric against health reform, especially in the condemnation of  comparative effectiveness determination.

Secondly, even highly authoritative institutions have to change their tune once in a while. When I joined cancer public health in the ’70s the medical community almost universally rejected the idea that food and nutrition had anything to do with the prevention of cancer. People who talked about a relation between nutrition and cancer were sneered at and called the “fruits and nuts” crowd. Thirty-five years later as I approached retirement I had to chuckle inwardly many times about the current enthusiasm for the view that diet and nutrition are key to the prevention of much cancer. These days ya gotta eat your greens and grains!

Thirdly, doctors themselves are not always reliable sources of informaiton. That’s why we have second and sometimes third opinions. Drs. Hartzband and Groopman cite anecdotes about people who believe unsubstantiated information from the internet and suffer anxiety or waste doctors’ time. But I think most of us who have been around a few decades have our own fist full of stories from our own experiences or those of friends and acquaintances where doctors have failed to diagnose something or misdiagnosed situations, where lab tests have been wrong or complex treatments have been bolixed up in a hospital. I think the public knows all too well from well-publicized reports about medical errors by the Insyitutes of Medicine that the medical system itself is far from fault free. With regard to health it’s a risky world, even in the bosom of the medical establishment.

The article concludes:

As physicians, we are struggling to figure out how best to use this technology in the interests of our patients and ourselves. Although the Internet is reshaping the content of the conversation between doctor and patient, we believe the core relationship should not change. A relative recently asked us, “What can you possibly learn from your doctor that is not available on the Internet?” We suspect we’ll hear such radical sentiments increasingly in the future. Knowledge is said to be power, and some of the past imbalance of power between patient and doctor may be equalized. But information and knowledge do not equal wisdom, and it is too easy for nonexperts to take at face value statements made confidently by voices of authority. Physicians are in the best position to weigh information and advise patients, drawing on their understanding of available evidence as well as their training and experience. If anything, the wealth of information on the Internet will make such expertise and experience more essential. The doctor, in our view, will never be optional.

Uh, count me among the radicals. Let me say that the doctors are not totally negative about the internet, but their overall conclusion is that every patient should vet all their information through their physician. It sounds like they’re saying — like other professionsals who’ve had their domain disrupted by the internet — we’d all be better off if the internet went away and we could return to the status quo ante.

I’m just here to assert that that’s just not going to happen. The genie has been out of the jug for years and it’s not going back in. The Pew Internet and American Life Project has been documenting for years now the growing reliance of the public on the internet in health matters. Doctors just don’t seem to get it that there are needs that they’re just not satisfying. The use of digital media for health information and support is only going to increase, and rapidly.

My position is not that doctors are somehow unnecessary. However, I do believe that ordinary citizens are capable of knowing much more and doing much more about their own personal health and digital systems are an evolving platform for that. And after the so-called “health reform” slugfest we’ve been through I’m even more convinced that we all need to be more autonomous. We can’t continue to depend on a cabal of politicians, doctors, hospitals, insurance and pharmaceutical companies for our health. It’s just too important.

My suggestion to physicians is, instead of promoting a somewhat idealized notion of the doctor-patient relationship unsullied by the internet, why not work with citizens, professionals, and organizations to make the internet a better platform for the public and for doctors and patients to work together around their health issues? There are many support measures that can be undertaken. If docotors are worried about accurate information then why not build a comprehensive, evidence-based, easily accessible, user-friendly information resource? Medpedia, a project started by a consortium of medical and public health schools, is an interesting and constructive exercise along this line. Only thing is, the site is not public-friendly and so far the effort appears not to have attracted much involvement from anyone but professionals.

The concern about people not being able to critically evaluate health information is certainly legitimate. In fact, evaluating ALL internet information is an issue. But where is the support system for helping people learn how to do that? Why don’t doctors and organizations get busy spelling out some guidelines for evaluation and get them disseminated through many channels? That would be constructive and doable.

There already is a kind of parallel world of information and tools starting to envelope the health sector. (Tip: If you think the internet is something, check out the apps in the iPhone App Store supposedly intended for medical professionals but perfectly downloadable by anybody.) It’s like the way the blog-o-sphere enveloped journalism. After a lot of pining for their old, defunct newspapers, more far-thinking journalists have learned how to work with digital media and to reclaim their futures. Something similar is happening in medicine and, hopefully, perceptive medical professionals will learn how to work with it rather than try to will it away.

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