New Efforts Underway to Improve Care for Veterans with Epilepsy
With financial support from UCB, the Department of Veterans Affairs and
PatientsLikeMe® will study patient-reported outcomes
ATLANTA, Jan. 22, 2013
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 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
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."
Lori Piscatelli Scanlon
1. 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),
3. Epilepsy Foundation. About Epilepsy.
http://www.epilepsyfoundation.org/aboutepilepsy/. Accessed 9/13/12.
The VA has funded the Epilepsy Centers of Excellence
(http://www.epilepsy.va.gov/). The Centers of Excellence are charged with:
(1) establishing a national system of care to all veterans with epilepsy, (2)
educating veterans and others in their lives impacted by epilepsy about high
quality epilepsy care, (3) providing health professional education and
training in order to deliver the highest quality of standard of care to
veterans with epilepsy, (4) utilizing national VA and other databases in order
to inform providers and policy makers in Central Office about health care
delivery and health policy decisions, (5) conducting state-of-the-art research
about epilepsy, and (6) implementing an informatics backbone to meet the above
UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company
focused on the discovery and development of innovative medicines and solutions
to transform the lives of people living with severe diseases of the immune
system or of the central nervous system. With more than 8,500 people in about
40 countries, the company generated revenue of EUR 3.2 billion in 2011. UCB is
listed on Euronext Brussels (symbol: UCB).
PatientsLikeMe is a patient network that helps improve lives and a real-time
research platform that advances medicine. Through the network, patients
connect with others who have the same disease orconditionand track and share
their own experiences. In the process, they generate data about the real-world
nature of disease that help researchers, pharmaceutical companies, regulators,
providers and nonprofits develop more effective products, services and care.
PatientsLikeMe has become a trusted source for real-world disease information
and aclinically robust resource that has published more than 25 peer-reviewed
research studies.Visit us atwww.patientslikeme.com or follow us via our
blog, Twitter or Facebook.
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