6 posts from November, 2010

PatientsLikeMe at Health 2.0: Paths to Insight

Posted November 15th, 2010 by

Last month, I spoke once again at the Health 2.0 conference in San Francisco.  The video of my presentation is now online.  Here’s a snapshot of what I covered in the 6-minute talk:

  • The wealth of data shared in a PatientsLikeMe treatment reports (e.g., what fibromyalgia patients are sharing about Cymbalta and Lyrica)
  • A suite analytical tools we have to drill down on this underlying data, such as
    • PatientsLikeMeLandscapeTM – a tool to learn more from what patients like you are talking about in the forum.
    • PatientsLikeMeListenTM – a sentiment analysis of keywords in those forum conversations
    • PatientsLikeMeInsightsTM – our query engine that dives deeper into the data (e.g., weight gain in Cymbalta/Lyrica patients)

As I note in my presentation, there are a lot of caveats to what I have up on the screen.  We as an organization believe in being careful about throwing terms around like “evidence.”  So what you see in this video is not evidence – it’s the first look at some of the data we have to work with and what we can do with it as we continue on our path to create evidence.  With no uncertain terms, though, what you see here is the beginning of the insight we can generate around clinical outcomes of patients and the real-world impact of treatments.

PatientsLikeMe member bheywood


Epilepsy Awareness Month: What do you know about Epilepsy?

Posted November 11th, 2010 by

epilepsyLaunched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients.  In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community.

Did you know…

  • You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
  • You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
  • Others in the community have indicated a causative comorbidity for their condition, such as:
    • Head injury (242 patients to date)
    • Brain tumor (70 patients to date)
    • Stroke (38 patients to date)
    • Encephalitis (34 patients to date)
  • 543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
  • Nearly 500 patients have completed the first in a series of surveys that measure their mental, physical and social well-being. (See “Manage your epilepsy like a PRO”)
    • As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).

How are our members treating their condition?

What are their major symptoms?

  • The 5 most common symptoms reported include: Memory problems, problems concentrating, fatigue, excessive daytime sleepiness (somnolence) and depressed mood.

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Keppra, Lamictal, Vimpat and Topamax), as well as seizures, seizure triggers, driving, and doctors.
  • Members share a lot about their experiences switching medications and managing side effects.
  • Members motivate each other to make the most out of their doctor visits by encouraging you to ask certain questions and be proactive in seeking care.

What else do you know?  Learn and share with PatientsLikeMe today.