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.