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New "Neurology" article shows value of online patient networks

Posted by
Patty Fritz, Patient Value Practices Development & Medical
Research co-led by UCB has been published in Neurology, a leading peer-reviewed journal. The study shows that online patient communities can help to improve epilepsy management.

People living with epilepsy are increasingly using web-based resources to help manage their condition. This can include searching for information about the disease and discussing their condition with other patients online.

The scientists behind the new research wanted to explore whether these online patient communities actually improve outcomes for patients.

The POEM study is a collaborative project by UCB, the San Francisco Veterans Administration (VA), and PatientsLikeMe (PLM).

It is the first real-world study of an online health management platform to show significant improvements in established metrics of epilepsy self-management.

So what exactly did the researchers do?

The study asked veterans living with epilepsy to complete a baseline assessment of two validated scales that measure epilepsy self-management practices, the Epilepsy Self-Management Scale (ESMS) and the Epilepsy Self-Efficacy Scale (ESES).

After completing the initial survey, 249 patients were invited to register as PatientsLikeMe members and engage on the site, which offers multiple ways for patients to connect with other patients, condition-specific tracking tools and educational resources.

Six weeks later, 92 participants (36.9%) completed the assessment of ESES and ESMS measures again. These veterans reported improvement in epilepsy self-management and self-efficacy, demonstrated by increases in both the ESMS and ESES total scores over six weeks. The greatest change was observed on the ESMS information management subscale.

Regular readers of UCB stories might recall that initial findings from the study were presented at the 66th Annual Meeting of the American Academy of Neurology in Philadelphia.

The publication of these data in a highly-regarded academic journal is a testament to the quality of the research.

It is also an excellent example of how UCB is contributing to improving the lives of people with epilepsy. It shows our ongoing commitment to collaborate with other stakeholders that share our goal of making a measurable difference to patients' lives.