UCB partners with PatientsLikeMe to create epilepsy community; adverse event reporting part of the package

I know that many pharma brand marketers are constrained by their own regulatory people who will not let them participate in social media programs or even monitor the conversation happening all around them. Well here is an example of one company doing just the opposite. ucbUCB, headquartered in Brussels with a U.S. presence in Georgia, just announced a partnership with PatientsLikeMe (PLM) to create an online epilepsy community that enables patients to track the daily issues they confront living with the disease such as controlling their seizures and achieving treatment goals. The social community aspect should encourage patients, caregivers and researchers to share information with each other and help industry learn more about the disease and treatment experiences.

According to Medical Marketing & Media, UCB and PLM are working cooperatively to create a pharmacovigilance platform that will monitor the site for adverse events (only those associated with UCB products), which will then be reported directly to the FDA. No personal or identifiable information will be sent to either the FDA or UCB without the permission of the patient.

UCB is the first pharma company to partner with PatientsLikeMe to launch a patient community; the epilepsy community is expected to launch in early 2010.

I have often said that it is only when those in the C-suite take social media seriously that things will happen. Kudos to UCB's CEO who championed this initiative. In the press release announcing the initiative he said, "UCB has a longstanding commitment to improving the lives of people living with severe conditions. This partnership is exciting because for the first time, patients will be able to contribute their experiences and real-world data to ongoing epilepsy research."