15 posts tagged “online community”

One for All: The PatientsLikeMe “Welcome Wagon”

Posted December 8th, 2010 by

plm_ms_comments_diamondlil582

In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it.  Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others.

One method of reaching out to another member on PatientsLikeMe is by leaving a comment on their profile page.  Often, you exchange comments to inquire about specific data on someone’s profile or to thank them for sharing.  However, one of the most common uses of the comments functionality is for existing members to welcome new members to the community.  This is has been affectionately coined the “Welcome Wagon,” and it is most prominent in our MS community.  Today, more than 71% of members in that community get a comment within the first 2 days.  Receiving a comment from a veteran PatientsLikeMe member when you first join the site is a great way to “welcome” you aboard and make you feel a part of the community.

A large part of the effectiveness of the MS Welcome Wagon can be attributed to a member named Diamondlil58.  Of the 150,000 comments that have been left on PatientsLikeMe, Diamondlil58 has left a staggering 16,000 of them, addressed to over 15,000 different members.  The graph above shows just how extensively Diamondlil58 has connected with the community through commenting.  In the graph, the dots represents patients in our MS community, and the lines represent a comment between them.  Diamondlil58 is the large green dot near the center.  Notice how she has touched both the inter-connected network of patients (on the right), as well as sent out a huge number of comments to others who aren’t yet as well-connected (the moon-like diagram on the left).  A large portion of these comments were part of the Welcome Wagon.

While the Welcome Wagon was started in the MS community, it has definitely caught on in other communities.  Here is a look at how Babsie, an active member in our Fibromyalgia community, has reached out to welcome new members.  Like Diamondlil38, Babsie has helped create a network of dialogue and connection between patients like you.

plm_fibro_comments_babsie

It’s inspiring to see how one person can touch so many.  Members often tell us how beneficial it is to have a way to find “patients like me.”  (In fact, we cited a few examples yesterday from our research study that shows just how valuable that can be to one’s health).  However, that “find” functionality alone is not what makes this community what it is today.  It’s the people who are using it.  It’s the people who are willing to openly share with one another; the people who reach out to make those connections (sometimes initiated by beacons, like Diamondlil58); it’s people like you who make the most of being a member of PatientsLikeMe.

The next two blogs in this series will include interviews with Diamondlil58 and Babsie.  Stay tuned as we climb aboard the Welcome Wagon and hear what they have to say.

PatientsLikeMe member jcole


Multiple Sclerosis Awareness Week: Interview with Gardener

Posted March 10th, 2010 by

It’s National Multiple Sclerosis (MS) Awareness Week.  There are more than 17,400 patients in the PatientsLikeMe MS community sharing data about their symptoms, treatments and side effects, lifestyle modifications and overall health outcomes.

In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit partners on the blog each week to help raise awareness about real-world experiences with the condition and initiatives that are keeping the research going.  Today, is our interview with gardener, one of our very active patient members who joined the community back in 2007 just after it launched.  She recently answered some questions from Amy Morton, a member of our marketing team here at PatientsLikeMe, about life, living with MS and being a member of PatientsLikeMe.

2166 (Amy) What’s on your mind these days?
3203 (Gardener) Right now, at this moment, my cats, because they’re begging for food, and being very loud and persistent.

In general, I’ve been focusing on violin and accordion performances coming up in April. I’m playing dance solos. It should be fun. That, and figuring out something to make as a demo for this month’s sewing group. I went over two years of having something new at every meeting until October of last year, then got whacked by a bout of depression.

It’s lifting, and things are fun again. My friends aren’t annoying anymore, either. Come to think of it, everyone was kind of annoying during the worst of it. At the time, I told a friend I wanted to curl up in the bottom of my closet. She suggested bringing along a fluffy blanket and a pillow.  That wasn’t an annoying suggestion.

2166 (Amy) What do you enjoy most about winter?
3203 (Gardener) Watching my dog play in the snow. He likes the deep fluffy snow we’ve gotten recently and shows such joy running through it. The lower temperature is nice, too, as is meeting people for whom this is their first real winter. Seeing others enjoy things like snowball fights so much gives me a better outlook on winter. I have never been good at throwing, so I just watch.
2166 (Amy) How do you keep perspective with your condition?
3203 (Gardener) For a long time, I’ve tried to keep in mind that the only constant is change. That outlook helped a lot when I was diagnosed. This is no one’s fault, it’s not a lesson, and it didn’t happen for a reason. MS is a random thing. It’s hard to take random things personally. Also, I’ve had friends go through refugee situations. After hearing their stories, it’s hard to think of this as more than an inconvenience. Yes, MS sucks, but there are many things that are worse.
2166 (Amy) Share why you decided to make your profile public.
3203 (Gardener) Something that I’ve found frustrating in general is how few things people really discuss. By having the profiles open, you can see what others are taking for symptoms, and how they like the treatments. You can also see what kind of results people are getting with what they’re doing. It would be hypocritical to use a resource like that and not return the favor. Also, PatientsLikeMe feels like a safe place to share.
2166 (Amy) Thanks for sharing, Gardener!