Study shows value in social media
A clinical trial of 596 patients testing whether lithium would slow the progression of Lou Gehrig's disease, also known as amyotrophic lateral sclerosis (ALS), did not have positive results. However, the findings did show that the use of a social network to enroll patients and report and collect data may be useful for future studies, according to The Wall Street Journal.
The clinical study, published online in Nature Biotechnology, is an example of how social networking could play a role in clinical trials.
"The approach has tremendous potential,'' said Lee Hartwell, a Nobel Prize-winning scientist now at Arizona State University, and formerly president of the Fred Hutchinson Cancer Research Center. Standard clinical trials are the core in the research activity at these institutions.
Hartwell, who wasn't involved in the study, said social-network trials won’t replace conventional randomized, double-blinded, placebo-controlled trials, the gold-standard for generating medical evidence. But such trials have become so complicated and time-consuming that new models are needed, he said.
Compared to traditional studies, social networking studies take about nine months to design, recruit and get preliminary results. Patients are self-selected via the internet and can participate from anywhere in the world and the date results are made available online, as reported in The Wall Street Journal.
Paul Wicks, a co-author of the paper, said social network-run studies may be most beneficial for testing efficacy of so-called off-label or off-patent compounds that patients are using but are unlikely to ever attract pharmaceutical company interest.
With several diseases, "sometimes the alternative is not our way or the old way. It is our way or it is not studied at all,'' said Wicks, the research and development director at PatientsLikeMe, a health-data sharing company in Cambridge, Mass., that conducted the lithium study.
More than 4,300 patients participate on the PatientsLikeMe ALS site. This is where they share information on how their disease is progressing and approaches they are using to fight it.