MONTHLY MUSINGS

There’s been a lot of buzz about “big data” and how it has the potential to change everything. 

Earlier this year, the White House even started a big data initiative—noting that when we “extract knowledge and insights from large and complex collections of digital data…[we can] help accelerate the pace of discovery in science and engineering, strengthen our national security, and transform teaching and learning.”

Did you know that you are contributing to big data at PatientsLikeMe? As of July 2012, PatientsLikeMe members have shared…

• 4,029,661 symptom reports about 7,338 symptoms
• 548,650 treatment histories about 12,838 treatments

This data, in turn, is reflected back to you to learn from, and it’s also used to advance research.  Over the last five years, our PatientsLikeMe research team has published 27 studies, including a recent “hat trick” of three published studies in one week.  We’ve also shared your aggregated data with our partners, such as the trailblazing researchers behind ALS Untangled.  Finally, our data-sharing platform and advocacy for openness have been discussed in more than 1,500 publications.

As Fast Company states, “Big changes are ahead for the health care industry, courtesy of big data.”  We couldn’t agree more.  So thank you for continuing to share your data, and in the process, helping the world at large see the benefits. 

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

Have you poked around the forum recently?  We now have lots of different rooms to meet your needs.  For example, did you know about the Eye, Ears, Nose and Throat Room?  Or the Heart, Blood and Circulatory Room?  Find your favorite room(s) and check out some of these active threads below.

• Getting a PEG feeding tube (ALS Room)
• Do you think stress triggers PD?  (PD Room)
• What you do before/after a seizure (Epilepsy Room)
• Fibro fog moment of the week  (FM/CFS/ME Room)
• How your kids reacted to your MS (MS Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from longtime members.