2 posts tagged “condition reports”

A Peek at the May Newsletter for Members

Posted May 29th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our May 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

Why PatientsLikeMe?  Over the years, many of you have shared why you’re here. We recently found some videos of members like you who helped create the community of 150,000+ that we are today.  Here’s what they had to say:

“To be truthful, I’ve learned a whole lot more from other patients than I could ever have in a doctor’s office,”  judy4etsu told us.  According to pokie too, who has PDepilepsy and type 2 diabetes, “You’ve got to talk to somebody.  You’ve got to say, ‘I’m having a bad day.’”  For sontzie66, it’s the disease measurement tools like the Parkinson’s Disease Rating Scale (PDRS).  “I answered all the questions, and I got my rating of where I was,” she said.  “I had no idea what level I was with the disease.”

Thanks to all of our members for being so willing to share your voices through videos, blog interviews, forum posts and more. Your experience matters and sharing what it’s like to live in your shoes is helping to change healthcare for the better.

What’s it like for youAdd a story to your profile today.

Kate, Emma, Liz, Jeanette & Sharry

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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 Lungs and Respiratory Room, Women’s Health and Pregnancy Room and Kidneys and Urinary Room?  Find your favorite room(s) and check out these active threads below.

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

CONDITIONS GO INTERACTIVE

What do you want to learn at PatientsLikeMe?  This is a question we started asking new members during signup a few months ago.  Now, all of their comments are featured instantly on our new condition reports, and you have the opportunity to reply!  Visit the “Who’s New” tab (pictured above) to welcome a new member or offer a bit of advice.

In addition, there are now live feeds of all new profile stories related to that condition, including condition updates, symptom updates and QOL survey answers.  (See an example here.)  That way, you can keep up with your condition’s activity in real time and see other members’ comments, stories and replies all in one place.

Explore our revamped condition reports (while logged in) to try out these new interactive features!



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

Kate"" Emma"" Jeanette"" Sharry""

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!