4 posts tagged “treatment reports”

A Peek at the April Newsletter for Members

Posted April 25th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our April edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

What’s with sharing, anyways?

We’ve said it before, and we’ll say it again – we believe in the power of openness. By sharing your experiences, healthcare can be changed for the better.  You can monitor your health status and make changes accordingly; you can find out you’re not alone; and both patients and organizations can do research based on your real-world experiences.

Every single patient on our site contributes to this change.  When you add conditions, treatments and symptoms, you’re entering data that enables others to learn from you.  The way we see it, when everyone shares, everyone benefits.  To see how, check out these reports and dig deeper into the individual stories and data.

Treatment Reports
Things you can learn: How is this treatment working for other patients?  What side effects have they reported?  What are the most common dosages?

Symptom Reports
Things you can learn: How many other patients have experienced this symptom?  What are they taking to treat or manage it?  How severe is it for them?

Condition Reports
Things you can learn: Who else has this disease?  When did they experience their first symptom?  What are some of the most common treatments?

Thanks for everything that you’ve shared – and continue to share – at PatientsLikeMe.  Here’s to all that will be learned in 2012 as a result!

Kate, Emma, Liz, Jeanette & Sharry

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JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

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

WHAT’S YOUR STORY?

Everyone has one.  Tell yours in our new open text box (shown below).  Anyone who follows you will then see your story in their feed.  Stories are also important part of your health journal.  Have you used the new journal feature? Adding a story (and photo!) about any of your conditions is a great way to get started.

Tell Your Story in Freeform Text and/or Photos!


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