4 posts from January, 2010

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 ALS Progression Chart Upgrades

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.

Exciting New ALS Progression Chart Upgrades at PatientsLikeMe

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.
    timescale_switcher
  • 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