A conversation with Rene Hansen, Global Director of Business Transformation at UCB Pharma and Benjamin Heywood, Co-founder and President of PatientsLikeMe, about the strategic partnership between UCB and PatientsLikeMe to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.
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FDA adverse-event (AE) reporting requirements have often been cited as a major impediment hindering pharmaceutical companies from sponsoring or creating truly open-ended social networking communities, even if they are not product related.
Social media advocates, however, have long suggested that it is possible to handle any adverse events reported on pharma-sponsored sites, but no drug company was brave enough to be the first to try it -- until now!
Biopharma company UCB and PatientsLikeMe, an online community for people with life-changing conditions, recently announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.
This "platform," which is scheduled to launch in early 2010, is designed to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen. That information specifically INCLUDES adverse events!
PatientsLikeMe.com and UCB will create a pharmacovigilance program to monitor the site for adverse events and report directly to the FDA adverse events associated with UCB products.
Why did UCB decide to sponsor an online, open epilepsy community on PatientsLikeMe?
Is UCB required by law to report AEs that may be mentioned on a 3rd-party site it sponsors? Or was this just a good practice decision?
Please describe how AEs will be handled.
Rene Hansen, a passionate and pioneering executive, has held several positions in UCB to actively support the transformation of the organization from a hybrid group into a fully focused Biopharma company. As a latest step, Rene has created a strategic partnership between UCB and PatientsLikeMe. This partnership marks the first time a pharmaceutical company has openly and scientifically engaged with social media to learn about patients’ experiences.
Before joining the Health Industry, Rene ran his own agency, ZaPPWeRK, which specialized in Internet technology, marketing strategy, and design. The award-winning company provided a suite of services to leading organisations and brands and headed prestigious initiatives. Since 2003, the company has partnered with the Total Identity Network, the leading international corporate identity network in the Netherlands.
Rene holds a M.S. degree in Electrical Engineering from Delft University of Technology in the Netherlands and a MBA from IESE Business School in Spain, a top-ranked, internationally recognized business school. He has lived and worked on four different continents.
Benjamin Heywood has served as the president and director of PatientsLikeMe since its
inception in 2004. His professional experience spans a diverse set of operational areas
including successful ventures in the medical device industry, the entertainment industry, and in
speculative residential real estate development. After graduating from Massachusetts Institute
of Technology (MIT), Heywood moved to Silicon Valley to work for Target Therapeutics, the
leading designer and manufacturer of microcatheter-based products for the treatment of stroke.
After significant involvement in both manufacturing and product design, he eventually moved
into Business Development until Boston Scientific acquired the company. Prior to co-founding
PatientsLikeMe, Heywood was a Creative Executive at the film and television production
company SideStreet Entertainment. While working in Hollywood, he produced an awardwinning
short film, Flush, and worked in both production and script development on numerous
A highly regarded thought leader in the Health 2.0 industry, Heywood is a frequent
speaker at conferences and source for the news media on topics in this space. He has been
quoted in New York Times, New York Times Magazine, Newsweek, CNNMoney and numerous
trade publications. Heywood earned his Bachelor's degree in Mechanical Engineering from MIT
and received his MBA from the UCLA Anderson Graduate School of Management.