2 posts tagged “evidence”

Social media users say ‘yes’ to sharing health data

Posted January 23rd, 2014 by

There are some new survey results that just came out from the Institute of Medicine’s Evidence Communication Innovation Collaborative (ECIC) that show social media users give the stamp of approval to sharing health data. (A big, public shout out to the more than 2,000 PatientsLikeMe members who participated in the survey.) It’s very exciting to see the voices of so many in the community having such an impact.

Check out the results below and read more about it in the PatientsLikeMe newsroom.

 


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