19 posts from June, 2011

Celebrate the Role of Social Media Today

Posted June 30th, 2011 by

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”

Social Media Day 2011, sponsored by Mashable

Mashable is encouraging everyone who uses social media to take part in the second annual celebration. Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter. We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.

That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients. Before, there was only the information and advice provided by your doctors. Now, you have access to a wealth of real-world experiences and data from patients around the globe. As a result, you can ask smarter questions, make better decisions and take greater control of your own care.

Social media has also helped to accelerate medical research. A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments. There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.

So if social media can help both patients and researchers, it’s worth celebrating, no? Share your thoughts on how social media has impacted your life in the comments section below. (And, yes, that would count as another social media activity!)

Giving Health Statistics a Good Name

Posted June 29th, 2011 by

Mark Twain popularized the notion that there are three kinds of lies: “lies, damned lies, and statistics.” But there’s a cure for bad statistics, and that cure is openness.

When our study of the effects of lithium in ALS was published in Nature Biotechnology, we not only presented the usual background and analysis, but we also included all the data that were used to support the analysis. (The data were de-identified, of course.)

A Chart from the PatientsLikeMe ALS and Lithium Study Published in Nature Biotechnology

This “data openness” was one aspect of our study – as well as the ensuing media coverage in the Wall Street Journal and other outlets – that caught the eye of folks at the National Institute of Statistical Sciences (NISS). They were in the midst of organizing a workshop on observational medical studies (like our study), and they invited PatientsLikeMe to discuss our lithium research there. As one of the study authors, I went to represent PatientsLikeMe and give a talk entitled “Drug Efficacy in the Wild.” (Click here to download a PowerPoint of my presentation.)

Sitting in a roomful of statisticians for two days might be considered a form of torture by some, but it’s the sort of thing I enjoy as a Research Scientist. I look forward to sharing ideas with my colleagues. Besides, the motto of NISS is “The Statistics Community Serving the Nation,” a theme that dovetails nicely with what we’re trying to do here at PatientsLikeMe. We believe it’s through real-world data and statistics that you can put your experience in context as a patient.

Ultimately, the NISS workshop did not disappoint. I heard some interesting talks, and I learned some new techniques for future work. My own talk was well received, and our approach to the lithium analysis was called “refreshing.” There were a few people there who were not yet aware of PatientsLikeMe, and they were particularly fascinated by this new way in which patients could gather information and work together to learn about treating their illness.

Of course, none of this would be possible without you. Your shared data is what drives our research capabilities and helps us all answer the questions that we have about disease. So, as always, thank you, and keep on sharing!

PatientsLikeMe member tvaughan