In today’s news…

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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe^®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site.

The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9^th-16^th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here to see the full news release.

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.

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.)

In honor of the launch of the new PatientsLikeMe Epilepsy community this week, we have created a video highlighting how patients are coming together to share their experiences with epilepsy and learn from others. It’s now available on our PatientsLikeMe Epilepsy YouTube page.

This short video includes quotes from some of our members about what drove them to join the online community, and walks you through what the community looks like and how members are using it.   Know someone with epilepsy?  Share this video, our interview with Blueyedgoddez, and/or our announcement with partnering company, UCB.

Welcome to all those joining the epilepsy community!

(Special thanks to our new marketing team member, Aaron Fleishman, for pulling this video together.  It’s Aaron’s voice and his band’s music you’ll hear throughout.)

Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy

CAMBRIDGE, MA and ATLANTA, GA — (Marketwire – January 26, 2010) –  Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning from patients’ real-world experiences, the online community allows members to create profiles that record and share their treatments, symptoms, as well as seizure type, frequency and severity.

“As a patient-centered company, we are constantly seeking innovative ways to enhance and adjust our approaches to meet patient needs,” says Iris Loew-Friedrich, Executive Vice-President, Chief Medical Officer, UCB. “We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”

Among the research being conducted, PatientsLikeMe and UCB are analyzing anonymized data shared by participating epilepsy patients, with their consent, via an online clinical survey built into the site to measure patients’ quality of life (including cognitive, social and physical function). Completed by 60 patients testing the site since mid-November, initial survey results show the patients are most concerned with the cognitive impact of living with epilepsy (such as lack of concentration or memory loss).

Adds Ben Heywood, co-founder and president of PatientsLikeMe, “Patients are telling us that, in addition to seizures, there are many more significant aspects to the disease. It’s this type of real-world data and insight about epilepsy that is going to change how this disease is treated.”

To better understand the impact of medications that treat epilepsy in the real world, PatientsLikeMe and UCB are also taking the lead in implementing a drug safety program within this patient community. The program is designed to capture and report adverse events associated with approved UCB epilepsy therapies to the U.S. Food and Drug Administration (FDA).

Last June, PatientsLikeMe and UCB announced this strategic partnership to build an online community for people living with epilepsy, which debuts today at www.patientslikeme.com/epilepsy/community.

You can see the full news release from PatientsLikeMe and UCB on Marketwire.