12 posts tagged “social networking”

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


One for All: The Connected Community of PatientsLikeMe

Posted December 7th, 2010 by

Comments between Epilepsy patients on PatientsLikeMe

PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data.  So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports.   We believe this enormous collection of health data will dramatically improve how patients manage their conditions.

But there are more benefits to joining a community of patients like those on PatientsLikeMe than just sharing data: the social support from interacting with other patients has a real effect on improving patient outcomes.  In a recent study published in the Journal for Medical Internet Research (JMIR), our research team found that nearly half of survey respondents (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition.  Furthermore, the survey shows that those patients on PatientsLikeMe who make close relationships with other members receive significantly more benefits from those who do not.

So it is worth taking a moment to look at just how extensive the social connections are on PatientsLikeMe, and how many patients have reached out to other patients and helped improve their lives.

There are many ways to connect with other patients on PatientsLikeMe, ranging from communal conversation in our forums to direct one-on-one personal messages.  While some of this dialogue is centered around sharing of health information and experiences, a part of it is purely meant as conversational discussion about everyday life.  All of these interactions are important, because they help tie a community together.  Here’s a glance at some of the ways you’ve connected:

Forum

  • You’ve created 1.2 million posts composed of 94 million words about 86,048 topics
  • 21,865 of you have created at least one post, and 54,839 of you have viewed at least one post
  • You’ve marked posts as “helpful” 1.2 million times

Personal Messages

  • 25,062 of you have sent a total of 751,668 messages
  • 723 of you have individually sent over 100 messages

Patient Profile Pages

  • You’ve viewed our 80,000 patient profile pages over 15 million times
  • 11,874 of you have left over 156,196 comments on other members’ profile pages

(Note: numbers are across all communities.)

While these numbers show just how much sharing has been going on, the following graph illustrates what the connections are like between our members.  In this graph, the dots represent patients, and the lines between them connect any two patients who have shared at least 5 personal messages together.  Note how many patients are interconnected.   By reaching out to one another for support, conversation, data sharing and more, you’ve created a universe of dialogue that has never existed amongst patients like you.

Personal Messages between Patients on PatientsLikeMe

Click for full-sized version. A graph showing personal messages made between some of the patients on PatientsLikeMe. The dots represent patients, and a line represents at least 5 personal messages between them.

Moreover, what you’re sharing with each other through these various connections represents the largest data set of its kind linking conversations to outcomes and overall health experience. This week on the blog, we’ll delve into some of these connections that have been spurred by some of our members.  However, we also want to recognize that even the silent contributors (those connecting behind the scenes or outside of the forum spotlight) are as much to thank for this open network.  All for one and one for all.

(About the title image. This graph shows all comments made between Epilepsy patients on PatientsLikeMe. The dots represent patients, and the lines between them represent at least one comment made. Note the highly connected network of patients in the center. Click for full-sized image.)

PatientsLikeMe member jcole