Lifestyle-related diseases and individual responsibility through the prism of solidarity

Patients with serious diseases may experiment with drugs that have not received regulatory approval. Online patient communities structured around quantitative outcome data have the potential to provide an observational environment to monitor such drug usage and its consequences. Here we describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment. To reduce potential bias owing to lack of randomization, we developed an algorithm to match 149 treated patients to multiple controls (447 total) based on the progression of their disease course. At 12 months after treatment, we found no effect of lithium on disease progression. Although observational studies using unblinded data are not a substitute for double-blind randomized control trials, this 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.

This article examines the continuing controversies regarding personal versus social responsibility for health as they are being played out at the turn of the century. Following a brief examination of the contested meaning of "personal responsibility for health" in recent historical context, attention is focused on the arguments for and against holding the individual to be primarily accountable for his or her health behavior. The paper then makes the case for more balanced, ecological approaches that stress individual responsibility for health within the context of broader social responsibility. The article concludes by briefly summarizing the Canadian approach to health promotion as a useful example of what such a balanced, ecological approach might look like.