THCB

One Doctor’s View of Personal Science: You Won’t Learn Anything.

Bryan Castañeda, who lives in Southern California, told me this:

The law firm I work at specializes in toxic torts. We represent people who have been occupationally exposed to chemicals and are now sick, dying, or dead. Most of our clients have been exposed to benzene and developed some kind of leukemia. We sponsor various leukemia charities, walks, and other events. [On January 21, 2012] in Woodland Hills, CA, the Leukemia & Lymphoma Society held its first annual Blood Cancer Conference. Although the speakers were mainly doctors, it was a conference meant for laymen. The chair was an oncologist from UCLA Medical Center.

After introductory remarks and the keynote speaker, there were several breakout sessions. I attended a session on acute lymphoblastic leukemia and acute myeloid leukemia. The speaker was [Dr. Ravi Bhatia,] a doctor specializing in leukemia from City of Hope in Duarte, CA. His talk was almost exclusively about new drugs and clinical trials. Very dry and dull. Things got more interesting during the question period. At one point, [Dr. Bhatia] told an attendee not to experiment on his own because “you won’t learn anything and others won’t learn from it, either.”

I would have liked to ask Dr. Bhatia three questions:

1. What’s the basis for this extreme claim (“you won’t learn anything and others won’t learn from it”)? Ben Williams, a psychology professor at UC San Diego, wrote a whole book (Surviving “Terminal” Cancer, 2002) about taking an active approach when faced with a very serious disease (in his case, brain cancer). Likewise, the website Patients Like Me is devoted to (among other things) learning from the experimentation of its members. Lots of forums related to various illnesses spread what one person learns to others. MedHelp has many forums devoted to sharing knowledge.

2. What’s so bad about “learning nothing”? Why should that outcome stop one from trying to learn? It doesn’t seem like a good enough reason.

3. Do you have a bias here? In other words, what do you want? Do you prefer that your patients not self= experiment? Doctors may prefer that their patients not experiment for their (the doctors’) own selfish reasons. When a patient self-experiments, it makes their doctor’s job more complicated and makes the doctor less important. If Dr. Bhatia is biased (he wants a certain outcome), it may bias his assessment of the evidence.

Seth Roberts is a professor of psychology at Tsinghua University and an emeritus professor of psychology at the University of California Berkeley. This piece is reposted from his blog. He is looking for stories where people use science or data collection to improve their own health. His email is twoutopias (at) gmail.com.

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Jazi zilberMaria DroujkovaSeth RobertsBKittrbar Recent comment authors
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Jazi zilber
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Jazi zilber Says: February 18th, 2012 at 7:43 am Let me respond to this guy 1) there are negatives to self experimentation. Likewise, there are negatives to talk with a doctor. Everything has negatives. Of only relevance is the sum of the effects. Indeed, one got to be smart. Always. Albit self experimentation requires a little more than aferage wisdom. 2) placebo effects are over rated. It is a cultural prejudice that placebo effects are “nothing” they are very real. And anything that bring about placebo improvements is highly welcome. If self experimentation is an effective method to induce placebo… Read more »

Bkitt
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Bkitt
Seth Roberts
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If rbar thinks self-experimentation is worthless he should take a look at my blog. I provide plenty of examples where self-experimentation was worthwhile. He could begin with a look at the acne piece previously published here. https://thehealthcareblog.com/blog/2011/12/30/acne-cured-by-self-experimentation/ Whether self-experimentation is better or worse than clinical trials is a different question than whether it has value. rbar provides a list of problems (e.g., “placebo effect”) that he says make self-experimentation worse than clinical trials. Let me narrow the question to patients. Is self-experimentation worse for patients than clinical trials — that is, trying to enroll in a clinical trial? Here are… Read more »

Bkitt
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Bkitt

I am not Mr. Roberts and think his piece was only mildly interesting (sorry Seth). The part I thought was interesting was your snap judgment and snarky tone in dismissing his approach based on limited information and zero consideration. Your reaction simply reaffirms why he wrote the column in the first place – that patients trying to arm themselves with information and empower themselves to affect their own outcomes face an uphill battle from many who dismiss their efforts as worthless without considering the potential benefits and how to make productive use of new tools available to us.

Bkitt
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Bkitt

I think you’re the one who is confused, rbar, and you’re missing the point. Neither of us know anything about the specific scenario in which Dr. Bhatia addressed the patient. But, it was used as an example of an outright dismissal of a patient attempting to empower himself to affect the outcome of his condition. This dismissal by a medical establishment that would prefer to treat docile patients in a paternalistic manner overlooks the benefits and potential benefits that empowered patients are only beginning to deliver through services such as Patients Like Me or CureTogether. Yes, this phenomenon does introduce… Read more »

rbar
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rbar

The context is described in the OP. If you do not happen to be Mr. Roberts (which I think is not entirely unlikely), I recommend that you read the paragraphs in italics again.

rbar
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rbar

Nice try of deliberately sowing confusion.

“(not to) experiment on his own” (taken from the OP) does not equate observational studies/epidemiologic research as you try to suggest.

BKitt
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BKitt

Controlled, double blind clinical trials have an important place in testing the efficacy of treatments, but they also have their limitations. These trials select patients with very specific profiles, must filter out confounding variables, and in the end may not reflect real-world scenarios. This is where observational and epidemiological data can play a valuable role. I believe Mr. Roberts is alluding to the power of aggregating real-world data across patients to generate insights into what may and may not work, not to giving undue weight to any single andecdotal case. With many of the new tools increasingly becoming available, this… Read more »

rbar
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rbar

Sigh. Mr Roberts did it again, he simply does not (want to ) understand that anecdotal evidence is of little value (let me give you an example: I self experiment with traffic signals; I noted that I can considerable cut down on travel times when ignoring redlights and stop signs; there are no drwabcks whatsoever, no one get hurts, and even my gas mileage/carbon footprint got better) . Individuals who have similar questions as Mr. Roberts should look up the following key words, because they may understand why controlled studies are far superior to anecdotal evidence: -placebo effect -regression to… Read more »

Maria Droujkova
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rbar, I think your list of possible pitfalls is valuable for anyone doing longitudinal case studies. It is similar to lists I remember seeing back in graduate school in various research handbooks. I do not see how you go from the fact that these effects and errors are possible to the conclusion that the whole endeavor isn’t worthwhile. The conclusion I make is that people doing longitudinal case studies, including those who observe themselves, should learn about these and other possible mistakes. Promisingly, online scientific communities are becoming more and more open. So people who want to learn can now… Read more »