One for All

One for All: A Cross View of Patient Sharing

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series). Today, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out. DID YOU KNOW… Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older. Approximately 31% (or 27,013) of patient members across all communities experience depression. How are you treating your condition? You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc. One of the top lifestyle modifications reported by our members is heat avoidance; and physical exercise is the #1 exercise cited. The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta). The top 3 supplements …

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The Patient Rules. A Discussion with the PatientsLikeMe Executives

We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast.  In this PatientsLikeMeOnCallTM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future of PatientsLikeMe. Blog Series Themes: “Share and Compare” – where you learned more about how and why patients like you are sharing their health information to put their experiences in context. “One for All” – including visualizations on how one member of a community can be the catalyst for a universe of unparalleled dialogue and support. While discussing how patients can continue to drive the health care process, they also help us preview this week’s discussion called “Treat Us Right.” Treat Us Right In this series, we focus on how you can see if your treatment is right, just by the information shared by patients like you; and how important your shared information is to research efforts – both for academia and industry to learn how they can help each of you make good choices about your treatments.  We’ve heard you tell industry to “Treat …

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One for All: Interview with Babsie (Fibromyalgia Community Welcomer)

To close out this week’s blog series (“One for All”), we bring you an interview with another noted “welcomer” from our Fibromyalgia community.  Meet Babsie.  A member of the 19,000-member community, she has commented on hundreds of patient profiles to date (which is highlighted in a graphic on Jeff Cole’s earlier blog here).   Read on to hear what Babsie has to say about why she joined the Fibromyalgia welcome wagon and what keeps her going. (Liz) Yesterday, we heard from MS community member, Diamondlil58, about her experiences welcoming members.  Why did you start welcoming people to the Fibromyalgia community? (Babsie) Someone welcomed me, and it made me feel good.  I never saw them on the forum, so after a few months I was curious and seeing the new patients without any subscribers or comments I would subscribe and make a comment. (Liz) What type of responses do you get from people you welcome?  (Babsie) Always favorable and kind.  Some prayed for me and others became friends outside of PatientsLikeMe. (Liz) Do you keep in touch with people you welcome? (Babsie) Yes, in the forum; it is easier so I encourage people to post there. I monitor the Patients Tab …

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One for All: Interview with Diamondlil58 (Welcomer of 15k Patients)

We’ve been learning about how connected our patients are this week in our blog series called “One for All.”  In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue.  Today, we sit down with one of those members, Diamondlil58.   A true “diamond” in the MS community, she has left more than 16,000 comments to  welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58. (Liz) How and why did you start welcoming people?  (Diamondlil58) I was welcomed to PatentsLikeMe by two lovely ladies – JHCamero and Greeneyes.  Their messages made me feel welcome. I wanted to give back to the MS Community.  I didn’t feel that I knew enough about the disease and the effects it had on others to offer advise in the forum.  But, greeting people is something that I felt comfortable doing. (Liz) What type of responses do you get from people you welcome? (Diamondlil58) I have received many nice replies from new patients.  Some tell me their experiences,  others ask questions or request help setting up their …

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One for All: The PatientsLikeMe “Welcome Wagon”

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 …

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One for All: The Connected Community of 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 …

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