By Russ Ward (@russcward)
Recently Ed Silverman wrote about Patient-Reported Outcomes on Internet Sites on Pharmalot – based on a study published in last months Nature Biotechnology that was conducted through online patient-support group Patients Like Me.
We – like you – are huge fans of Ed and his work, but this story really fascinated us, for reasons that Ed didnt explicate.
The investigators analyzed posts by 149 ALS patients trying a particular off-label treatment – and, long story short, found that it didnt work.
Obviously, 149 peoples Internet posts are not a substitute for the rigors of double-blind studies and the scientific method, as the study authors themselves noted. But the truth is that scientific discoveries often happen in less-than-rigorous ways: accidents and happenstance. After caveating their work as noted above, the authors concluded: “[T]his study reached the same conclusion as subsequent randomized trials, suggesting that data reported by patients over the internet may be useful for accelerating clinical discovery and evaluating the effectiveness of drugs already in use.
As Ed noted the benefits to this type of investigation include speed, diversity and cost – but also the high level of engagement of the participants. But, Ed is too much of a responsible journalist to say the really important thing, because its opinionated and informal. So well have to:
This is really fricking cool.
Not that the treatment didnt work. Thats unfortunate…but while certainly very pertinent for the patients in this case, its not actually the biggest part of this story.
The real story here is the process. The idea that social networks could speed up the process of finding new ways of saving and improving lives. That is whats so cool.
Now, of course we must be very careful not to read too much into online reports of treatment success or failure. Often the reports cant even be validated, let alone be proven to be indicative of a larger trend.
But, just as its important to track online reports of treatment side effects, we should be noting these reports. This data is here for the mining, and it would be a disservice to our patients – and yes, to science – if we were to ignore it. Hypotheses originate from anecdotal evidence, and social networks allow us unprecedented ability to gather this anecdotal evidence.