ATLANTA, Jan. 22, 2013 /PRNewswire/ --Today, the U.S. Department of Veterans Affairs' Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with epilepsy. The ECoE has recently completed a pilot study focused on collecting and sharing real world, patient-reported data on seizure frequency and severity, treatment adherence, patient and physician dialogue and overall quality of life. The study is now open and available to all veterans living with epilepsy at http://www.poemstudy.org.
"This collaborative effort, with partners from government and private industry, provides an exciting opportunity to improve the outcomes of the thousands of veterans with epilepsy. Our work together may also deliver insights into how we can improve the care for anyone with epilepsy," says study lead and ECoE's John Hixson, M.D.
As part of their initial partnership to help epilepsy patients, which began in 2010, PatientsLikeMe and UCB conducted a study of members of the PatientsLikeMe epilepsy community that showed that people with epilepsy who joined PatientsLikeMe better understood their own seizures and improved adherence to their medications.1,2 The new study of veterans will integrate validated clinical outcome measures alongside the patient-reported benefits of the online PatientsLikeMe community. The community platform allows patients to update their physician on aspects of their epilepsy, such as changes in symptoms and medication side effects, and enables physicians to view this patient data prior to clinic visits. The goal is to provide a complementary support system that enhances clinic visits and improves patient outcomes.
UCB,a leader inepilepsy, is providing the funding for the study. "We are committed to improving the standard of care for people living with epilepsy. We believe that this collaboration will address some of the unique challenges faced by veterans impacted by epilepsy and will be a model for other providers of care," says Patty Fritz, Vice President, Corporate Affairs and Operations at UCB.
According to the ECoE, approximately 5.6 million veterans visit VA Medical Centers each year, and approximately 66,000 of these veterans are diagnosed with seizures or epilepsy. Epilepsy is a chronic neurological disorder defined as two or more unprovoked seizures.3
Adds Jamie Heywood, co-founder and chairman of PatientsLikeMe, "This is a great opportunity to validate our earlier findings, which revealed that epilepsy patients using our website reduced side effects, increased compliance and reduced ER visits. Our partnership further demonstrates how committed UCB and the VA are to advancing innovation in health care. Collaborations like this will build the foundation for a patient-centric future in medicine."
CONTACTS: Judi Cheary (415) 750-2250 Judi.Cheary2@va.gov
Andrea Levin (770) 970-8352 Andrea.Levin@ucb.com
Lori Piscatelli Scanlon (617) 229-6643 lscanlon@patientslikeme.com
References1. Wicks, P., Keininger, D. L., Massagli, M. P., de la Loge, C., Brownstein, C., Isojarvi, J., & Heywood, J. (2011). Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy & Behavior.2. De la Loge, C., Massagli, M., Wicks, P. PatientsLikeMe, a data-sharing online community: benefits for patients with epilepsy. Presented at the 63rd Annual Meeting of the American Academy of Neurology (April 9-16 2011), Honolulu, USA. 3. Epilepsy Foundation. About Epilepsy. http://www.epilepsyfoundation.org/aboutepilepsy/. Accessed 9/13/12.
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New Efforts Underway to Improve Care for Veterans with Epilepsy