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.
Categories: Uncategorized
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 healing, it is a great reason to embrace it.
Besides, when someone tries many things and only some work, the odds for placebo effects are quite lower.
3) one MUST look for the statistical significance of self experimentation results.
4) one can only look for the statistical expected value for contribution to the world knowledge. It is childish to ask whether a specific finding will contribute. The question is whether it has some chance to contribute. And it has.
Every self experimenter has a tiny chance to add for new knowledge. But it adds up.
Besides, the average doctor adds zero to overal knowledge.
And since when do patients live for adding for the world’s knowledge? How ludicrous it is to even mention this to someone with a condition! People try things to get healthy.
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 do it for free, and with appropriate support from experienced peers and mentors.
Thoughtful discussion of the space by David Shaywitz of Forbes:
http://www.forbes.com/sites/davidshaywitz/2012/02/07/getting-better-online-communities-elevate-voice-of-the-patient/
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 some ways being in a clinical trial is likely to be better:
1. Free medicine. The remedies a patient tries himself will not be free.
2. Powerful medicine. The sort of drugs tested in a clinical trial are likely to be more powerful than anything a patient could easily get for himself.
3. Someone else keeps track. The researchers will store the data. (That they will provide all of the patient’s data to the patient isn’t always true.)
Here are some ways self-experimentation is likely to be better:
1. Easier to begin. It is rarely easy to enter a clinical trial. It may not even be possible.
2. Much wider range of treatment choices. If you study yourself you can try anything.
3. Safer. The drugs tested in clinical trials are almost always quite new with little or no track record that shows they are safe. In contrast, when you self-experiment you can choose treatments that have been around a long time.
4. More frequent measurement. When you study yourself you can measure the problem (e.g., acne) as often as you want — daily, for example. Clinical trials almost always involve assessments spaced at least weeks or months apart. With more data, you can learn more.
5. Treatment customized for you. With self-experimentation, you can change treatments as soon as you decide that something isn’t working. You have no such choice in a clinical trial. This benefit alone is a good reason that self-experimentation is likely to be better than a clinical trial.
Sure, not all self-experimentation is the same. Some is better, some is worse. But there are systemic reasons it may be better than clinical trial enrollment. The answer to the question (which is better?) is not as obvious as rbar says.
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.
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.
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 its own problems and challenges as patients can go too far in trying to diagnose themselves, but it is outweighed by the benefit of having informed patients and the opportunity to use cross-patient, real-world data to generate insights not available through traditional channels. There’s no confusion there.
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.
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 can be done in a fraction of the time and at a fraction of the cost. It is near-sighted to dismiss this type of research as anecdotal and worthless, let alone as reckless or counterproductive. These approaches do not suppose to replace clinical trials, but to fill in the gaps. John Snow didn’t do a clinical trial to determine that Cholera was killing people in London. He smartly aggregated data across patients to recognize patterns and yield actionable insights that no clinical trial could have done. We now have the opportunity to dramatically accelerate this process in countless scenarios, empowering patients to actively participate in the real-world research that may improve their lives and the lives of others like them.
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 the mean
-misattribution error
-self limited conditions/natural fluctuation of chronic conditions
-and in terms of drawbacks of experimentation: primum non nocere, and also the fact that anecdotal evidence adds relatively little to humanity’s knowledge base
Does all that mean that patients should not be well informed, active and making suggestions to their treating physicians? Of course absolutely not. Being knowledgeable about one’s codition is different from self experimentation. Is that intellectually challenging?