The Value of Openness: The PatientsLikeMe Blog

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

How can you stay connected with PatientsLikeMe – and other patients?

Let’s say you’re a new member. You’ve completed your profile, but you haven’t connected with that many other patients yet. Some weeks, you forget to check in and update things at PatientsLikeMe because life gets in the way. What can do you to stay on top of your profile as well as what patients like you are learning? Here are four easy ways to get more involved and stay better connected:

Saved Search Alerts
On the Patients tab, you can search for patients just like you using filters such as condition, gender, age, treatment and more. Now, you can also save your searches and get an email notification anytime someone who meets your search criteria joins. Simply click the yellow bell icon to turn on these alerts.

Profile Update Reminders
Things happen with your health all the time – not just on the day you’ve got a doctor’s appointment. Why not sign up to get regular email prompts to update your profile? It’ll help you capture subtle changes, spot emerging patterns and have a complete record for your Doctor Visit Sheet.

Mobile InstantMe Update
Has something with your health put you in a good or bad mood today? Update your InstantMe survey on the go using your iPhone/iPad. (See “This Month’s Site Improvements” below for more details on this new application (or “app”), currently available to three-star members.

Thread/Profile Subscriptions
Have you noticed that certain PatientsLikeMe members have a similar health status as you…but are trying a different treatment? Follow their experiences with other treatments by “subscribing” to their profiles and/or forum threads. Their updates will then automatically feed to your homepage.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your awesome feedback as we continue 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 July:

Are you an iPhone or iPad user? We have taken the first steps towards an app that will allow you to update your InstantMe survey on the go! No matter where you are, you can now share how you’re feeling and why.

Before rolling it out to everyone, we’re first giving our three-star members access to this app to help us test it out. (If you earn three stars, you’ll automatically see the button to download the app on your profile.)  Stay tuned as we work to expand this new and exciting functionality to all members as well as other types of mobile devices.

Last month, we introduced our clinical trial search feature, and since then, you’ve given us a lot of helpful feedback. Thank you! Here are some of our recent upgrades based on your input.

• Now you can select “Dismiss All” to clear out a large number of clinical trial matches – instead of having to delete them individually.
• Want to search “closed trials” that are no longer actively enrolling? Now you can do that too. This is helpful for past trial participants as well as those taking a drug that may be under investigation.

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up - here comes the patient voice!

Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.

Learning from each other can be addictive, and even fun at times. One of our more prolific (and outspoken and creative) MS members, Keeping On, decided to celebrate her 1000th post with a musical salute to some of the most humorous posts and posters in our MS community. So she got together with another witty member, sacleveand, to produce and star the video “We Have MS Together!”

As the holiday spirit finally came upon us we thought we should do something nice for our members. There are thousands of them (and many more every day), so it isn’t reasonable to thank every one (we may look like Santa Claus, but we’re not, sadly). So we decided to thank the “stars” of the community - our three star members- and send them a PatientsLikeMe package with a rare PatientsLikeMe T-shirt, and other goodies.

Here are some of our members showing off their new shirts….

This is one of our longer-time MS members, jhcamero, who has recorded 12 years of treatment and symptom information on the site. You have to love the “Christmas Story” lamp and stocking in the background.

This is Kakijade, who was diagnosed fairly recently, and has used the site to track her care since joining in August. Both of these members are frequent contributors to the site. Both are being treated with newer meds, and their sharing of their experience with these drugs is very helpful for other members.

PatientsLikeMe is about patients sharing their experiences and outcomes with each other so they can all better manage their disease and make the best possible decisions. These profile stars reflect how much sharing members are doing with one another. Three-star patients have provided detailed current and historical healthcare information about their condition. Having these complete profiles really helps others understand the history of the progression of the condition, and how it has been treated.

Everyone who had received their PatientsLikeMe package has been delighted, and we’re told they’re wearing them with pride, sharing their excitement for what the site means for them.

We look forward to sending out many more of these “thank you” packages to our three-star members.

As they say, “ho, ho, ho!”