What’s Wrong with Patients Sharing Information?

A “surgeon/scientist” named Orac complains that patients are sharing information on the effects of a drug (lithium) on their ALS (Lou Gehrig’s disease). What are his objections? As best I can tell:

  1. “This group testing lithium for ALS is no different than the desperate cancer patients trying out DCA, and it’s subject to the same shortcomings and opportunities for bias and self-deception that were so apparent on Jim Tassano’s DCA discussion boards.” This is like the statistics professors who complained about plotting data because you might see a pattern that isn’t there. Complaining that something isn’t perfect isn’t much of a criticism.
  2. “The designers of this project [information sharing] are fooling themselves if they think an unblinded, patient-driven clinical trial will accomplish what they think it will, although they do exhibit appropriate caution.” This isn’t clear; it isn’t clear what “what they think it will” means.
  3. “There are no controls, only in essence historical controls (i.e., the “predicted course”).” So? Historical controls aren’t worthless. They are used all the time in experimental science (e.g. pre/post comparisons). B. F. Skinner was a big advocate of historical controls. If you were evaluating a new type of surgery, you’d use historical controls to help decide if the new way is better or worse than old ways.
  4. “As hard as it is to believe, even for patients with ALS it is possible to make things worse. Lithium, for instance, is not a benign drug. It can cause neurological complications and diabetes insipidus.” Surely the patients know this and have decided the possible benefits outweigh the risks. Again, pointing out that something’s imperfect isn’t much of an argument.
  5. “Overall, when taken as a whole, it is far more likely that patients will be harmed by taking experimental or off-label drugs than significantly helped.” Far more likely? No evidence is given for this claim.

I believe, contra Orac, that sites like PatlentsLikeMe.com are a wonderful idea, well worth exploring. As Ben (short for Benedict) Casnocha says, it’s a good idea to know the other side of the argument.

5 Replies to “What’s Wrong with Patients Sharing Information?”

  1. There’s a strong whiff of guild jealousy in Orac’s protestations. To “accomplish what they think it will” can’t mean anything but “maybe get better”.

    What good could it possibly do them to get better if they aren’t really certain why they got better? How dare they deprive some honest primary investigator of a control? Even if it works, in the end, they’re just putting off the day when a patentable lithium-analog is approved for on-label use.

  2. I had an annual check up yesterday. My doctor is at an HMO (Kaiser Permanente). I told him about my dietary changes in response to having read Gary Taubes’ book “Good Calories, Bad Calories” (which he had never heard of!), posts on this blog, and on Stephen’s blog (http://wholehealthsource.blogspot.com/), etc. My dietary changes include: increased consumption of eggs, meat, dairy; decreased consumption of wheat and unsprouted/unsoaked grains and legumes and replacement with sprouted grains and non-gluten grains; replacement of vegetable oils with animal oils, such as butter and lard in my cooking; and taking high-vitamin cod liver oil and butter oil, ala Westin Price recommendations). He was very skeptical (except of the cod liver oil of which he approved) and cautioned me against making these dietary changes. I also asked him if he could request a fatty-acid test, but he declined because it was not a standard test of Kaiser’s. I asked him why he disapproved of my dietary changes and he said that, while there are some papers that may show benefits of each of the changes I have made, there are just as many papers showing the opposite. BUT he claimed that he did not know of the scientific literature on diet and health. He said he only reads the medical literature. I wasn’t aware of these literatures being separate! He apparently is not concerned or even interested in medical and nutritional science, even though he’s a general practitioner whose primary responsibility is the health of his patients! Instead, he seemed comfortable having the party line handed down from the “officials” above, and not straying from the boundaries set by the AMA (and AHA, etc.). This is a huge problem with the medical community as I see it. The great thing about the internet is not only the availability of information, but also the ability of a conscientious person to take matters into their own hand to gather information for themselves, make their own decisions, and share that information (e.g., these blogs) with other interested people.

    Some doctors are threatened by this change in information access. But even worse in my opinion is that others are merely apathetic.

  3. Aaron, he knows little or nothing about nutrition but cautions you against making certain dietary changes. Yeah, just like Orac. He knows little or nothing about experimental design, but he cautions against a certain experimental design. As for the apathy (at least Orac isn’t apathetic) a friend of mine had the same experience. He brought his doctor some data he had collected himself that was highly relevant to what to do about his problem. The doctor didn’t care. Perhaps I should be happy that when I was a graduate student and showed my dermatologist that one of the medicines he had prescribed had no effect on my acne, he was irritated (rather than apathetic).

    Nathan, I think “accomplish what they think it will” might mean something like “help others decide whether or not to try lithium.”

  4. he claimed that he did not know of the scientific literature on diet and health. He said he only reads the medical literature. I wasn’t aware of these literatures being separate! He apparently is not concerned or even interested in medical and nutritional science, even though he’s a general practitioner whose primary responsibility is the health of his patients!

    Michael Eades, a physician, wrote a post about how to talk to your doctor about diet:
    http://www.proteinpower.com/drmike/statins/talking-diet-your-doctor/

    In it he explains that most doctors never read scientific papers and are probably not even capable of it. By “medical literature” your doctor is referring to case reports, which Eades says is what most practicing physicians are familar with and capable of grasping. (He links to a case report to print and bring to your physician.)

    (BTW, good luck getting a Kaiser MD to order any test that isn’t absolutely necessary — doing so reduces his year-end bonus. He is well-incentivized not to indulge what he sees as your foolishness.)

  5. “(BTW, good luck getting a Kaiser MD to order any test that isn’t absolutely necessary — doing so reduces his year-end bonus. He is well-incentivized not to indulge what he sees as your foolishness.)”

    Thanks Tom. My doctor actually voluntarily confessed to this. At least he’s honest. Oh, and thanks for the link!

Comments are closed.