2 posts tagged “site improvements”

A Peek at the October Newsletter for Members

Posted October 31st, 2011 by

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

Do your friends and family give you the support you need as a patient? Or have you found that – despite their best efforts in some cases – they just don’t understand what you’re going through? We’ve noticed that this tends to be a hot topic in our forum, drawing many members to make their first post.

A PatientsLikeMe Member Enjoying Some Support

Here’s what some had to say:

  • “I was called a hypochondriac, a faker, a selfish jealous person, and the downfall of my family. I was astounded.” – Patient with fibromyalgia
  • “My friends know I have it and they are supportive, but I can tell some get uncomfortable talking about it.” – Patient with multiple sclerosis (MS)
  • “My family doesn’t really un derstand and has a tough it out or ‘pull yourself up by your bootstraps’ mentality.” – Patient with major depressive disorder
  • “I have lost two friends of over 10 years. They were sick of me being late, canceling plans, or saying I wasn’t up to doing things.” – Patient with rheumatoid arthritis (RA)

What about you? Do you believe anyone who’s not also living with the same conditions can truly “get it”? Share your stories in this ongoing forum discussion, a place where (as one member puts it) “you can find people who care because they know.”

Kate, Emma, Liz, Jeanette & Sharry

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

JOIN THE CONVERSATION

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

Need help using the site or want to learn more about recent changes?  Visit the Technical Help Using PatientsLikeMe Room.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site. Here are our top functionality enhancements for October.

A Popup Window for Entering Side Effects at PatientsLikeMe

In August, we changed the way we capture attributions – or the links between any two health concepts, such as treatments and side effects. As we watched you use these new features, we learned some valuable lessons about what makes sense to you from a user perspective and what is missing from a research perspective.  As a result, we’ve recently improved how we capture and reflect the data you’re entering so it’s done in the most meaningful way. See the full Release Notes for details on these recent changes to how you capture and share symptoms, side effects, “causes” and more.


A Peek at Our June Newsletter for Members

Posted July 1st, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June 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 over the last few rather eventful months, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

How do you find a clinical trial that’s right for you?

There are currently more than 30,000 actively recruiting clinical trials in the US. How do you stay on top of which ones you might be A) interested in, B) eligible for and C) within driving distance of?

PatientsLikeMe's Advanced Search Options for Clinical Trials

It sounds like a tall order, but thanks to our new clinical trial search feature, it’s not. Now, you can search real-time listings on our Clinical Trials page (which pulls directly from ClinicalTrials.gov) and bookmark any trials of interest. Beyond parameters such as disease, age, gender and zip code, our search filters allow you to customize your search by keyword, trial phase, type of intervention and the distance to the nearest trial site.

Clinical Trials Link on Every Patient Profile

Too busy to do regular searches? No problem. We have added a new link on your profile that shows the number of actively recruiting trials you may be eligible for based on your profile data. That way, you’ll get a heads up any time you log on to your profile. Simply click through to see what they are, who else at PatientsLikeMe may be eligible, where the study locations are (in helpful map form) and how to enroll.

Sounds easy, doesn’t it? We thought that’s how it should be, which is why we’ve been working hard to make this feature to available to you. Turns out others think it’s a pretty great idea too. We were recently honored with the “Best in Show” award at the 2nd Annual Health Data Initiative Forum for this innovative service.

THIS MONTH’S SITE IMPROVEMENTS

We are constantly working to improve our site. In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for June:

New Alert Tools for Saved Patient Searches

Ever wonder if any new patients like you have joined the site? Now you can be alerted by email when there are new results to a saved patient search. Simply click the alert button (the bell icon) next to your saved search to receive notifications.

For instance, want to know when a new patient taking a particular treatment joins? Easy. Create a saved search for that treatment and click the alert button.

PatientsLikeMe "Checkup" Reminder Emails

The best way to see how your treatments, symptoms and conditions are affecting your overall health is to keep your profile up-to-date. Sign up today to receive reminder emails that make it quick and easy to keep your profile current. If you already receive these notifications, you’ll see we’ve updated them a bit.