4 posts from January, 2010

Video: Introducing the New Epilepsy Community

Posted January 29th, 2010 by

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.)

Real-World Patients, Real-World Epilepsy:
An Interview with Blueyedgoddez

Posted January 27th, 2010 by

At PatientsLikeMe, we believe in getting to know the person, not just the patient.  To celebrate the launch of the new epilepsy community this week, we sat down (virtually) with 3-star member, Blueyedgoddez.  Here’s what she has to say about her experiences living with epilepsy:

plm_130x96 (PatientsLikeMe) First, welcome to the PatientsLikeMe epilepsy community!  Cool username, btw. How did you choose it?
75835 (Blueyedgoddez) I have blue eyes and I sometimes feel like a goddess, as silly as that may sound.  I don’t mean a goddess as in a rich snob or anything. I mean it like an earth child, that sort of thing.
plm_130x96 (PatientsLikeMe) When were you diagnosed with epilepsy? What was that like?
75835 (Blueyedgoddez) I had seizures since infancy, however i was officially diagnosed at the age of six. When I was a child, it was difficult in certain ways. Mostly because I knew I could never enjoy certain things that children enjoy – i.e., video games (at that time the resolution of the games were too high, the graphics would induce seizures), rollercoasters, the gravatron (at the carnival), any type of flashing party lights, among other things. As an adult, it’s not that much easier. I can’t drive under no means because where I live you need to be seizure-free for 5 years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child. The people I work with tend to say I use my epilepsy not to do things. How could anyone say I use Epilepsy to my benefit?  To me it’s very hurtful. It makes no sense. Also one other thing that seems to bother me as an adult is having children. I was told it’s going to be very difficult.

As you can see by now, it’s a journey having epilepsy. However, in the end, you learn to live, laugh and love – despite all your perils.

plm_130x96 (PatientsLikeMe) How does epilepsy impact your every day quality of life?
75835 (Blueyedgoddez) The disease in itself isn’t what really effects my day to day activities, however it’s more the side effects from the medication to treat my epilepsy. Everyday I’m bound with multiple side effects such as, fatigue, headaches, depression, anxiety, aches and pains, nausea, the list could go on. Some days I wake up fine, others not so fine. I have my good days and bad days.
plm_130x96 (PatientsLikeMe) What inspired you to join the PatientsLikeMe epilepsy community?
75835 (Blueyedgoddez) I joined because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me, more or less. That’s why I’m here to be helped and to help others. I have a voice and I intend on using it.
plm_130x96 (PatientsLikeMe) Thank you for using that voice and sharing your story and experiences with our community!

PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.

Posted January 26th, 2010 by

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.

picture-2“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.

PatientsLikeMe member lscanlon

Exciting New Profile Chart Upgrades in ALS Community

Posted January 20th, 2010 by

Today, we’re announcing an exciting major upgrade to our PatientsLikeMe platform – new profile charts with significant functional improvements.

We started PatientsLikeMe with the idea that visualizing your condition and treatment history over time is a powerful way to understand the impact of your treatment choices and tell the story of your progress to other patients like you.  So, we designed the website with the profile charts as the centerpiece around which the rest of the site activity is organized.


The new profile charts, which we’re rolling out today in the ALS community, are designed to help you understand your own profile better and tell your story more effectively. Ultimately, these charts will help you answer the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Here are some of the functionality improvements the members of our ALS community will notice:

  • Charting of treatment side effects. If you have reported side effects for a treatment (by filling out a treatment evaluation), you can now see them plotted on your profile underneath that treatment.treatment_side_effects
  • Charting of treatments taken for a symptom. If you have reported that you are taking a treatment for a particular symptom (by filling out the information in the treatment’s “purpose” section), you will see those treatments on your profile plotted underneath the symptom.treatments_for_a_symptom
  • Customizable timescale. It is now easy to see your history over various time spans from 1 month all the way up to the entire history, all at the click of a button.
  • General visualization clean-up. We made some design improvements to make the charts easier to read, such as the visualization of the treatment dosage changes.

What our members will notice more than any of these improvements is that when you interact with the chart (by zooming, opening/closing charts or side-effects, etc.), the interaction is smooth and instantaneous.  This is because we completely overhauled the technical platform we are using to display the charts. We think that this new technology will make it quicker and easier for us to give you even more chart innovations in the future.

(For the technically inclined, the old charts were static images with Ajax mouseovers and timeswitchers, and the new charts use Flash technology.  Note: All members must have the necessary Flash component installed to display the charts and, in some cases, a Flash installation upgrade may be necessary).

As with all our pilot programs, we will be testing it out to make sure it’s working well for our members. Once everything is working smoothly, we will roll the charts out to our other communities.  But even more exciting, we want to continue to add charting innovations, such as the ability to re-order treatments by purpose (treat my condition, treat a symptom, etc.) or overlay the profiles of other patients just like you.

These new charts are the first of many new exciting upgrades to the PatientsLikeMe platform this year. We add these enhancements because we want to stay true to our core values: putting “Patients First” and making changes that “Create Wow!” We hope you agree.

Do you have feedback on the charts or how we’re doing in general? Please let us know!

PatientsLikeMe member jcole