Life as an Extreme Sport

Another Anecdote Masquerading as Research

The Washington Post, today, tells us that an electrical technique may help to revive head-inury victims. On the face of it, it sounds promising: researchers at Cornell University’s Weill Medical College, the JFK Johnson Rehabilitation Institute and the Cleveland Clinic tried an established therapy known as deep brain stimulation (DBS), typically used to treat chronic pain, epilepsy, depression, and a host of other medical concerns, to stimulate the brain of a patient in a minimally conscious state. The result suggests that there might actually be a significant benefit to the minimally conscious patient: more reported days of alertness from people who were not aware when the patient was being stimulated, and when not. There’s also indication that the device doesn’t need to be working in order for the patient to receive benefit, that the benefits extend beyond the immediate.

It’s been tried before on patients in PVS, with no success. This is the first time it’s been tried in a minimally conscious patient, and shown to be successful. And there-in lies the problem. Patient. Singular. One. Three research institutes, one patient, and how many media articles talking about the revolutionary new discovery? Do you really think it matters that the story tosses one or two lines towards “this is an experiment” and “we need to try it in more people”? It’s reported as research, it’s reported as working, it’s reported as just needing more followup.

This is another example of McGee’s recent essay in The Scientist, of a case report being reported as research, an anecdote substituting for a controlled study with many patients. Yes, the institutes have jumped thru IRB hoops and have official sanction for the research, but one person does not make research. One person makes a story, an interesting aside, something to continue pursuing – not something to report to the world at large as a successful research protocol. It is, at its most basic, cruel to popularize this information when we don’t know if it will actually be successful; it gives what could amount to false hope, and that is simply irresponsible.

It’s a fascinating story, and it will be fascinating reserach when they get more people in and through the protocol. Until then, though, I think we need to question the wisdom of repeating one-off cases like this as anything more than what it is: to quote Stephen Greenblatt, it’s an anecdote of the register of the real.