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In an effort to learn as more about epilepsy sufferers, UCB will implement a social network that allows patients to communicate about their disease state and treatments. Think of it as one giant, online clinical trial.
Biopharmaceutical company UCB is out to prove that social media shouldn’t be a dirty word in pharma. The drug firm is joining forces with social network architect PatientsLikeMe to reach out to epilepsy patients.
PatientsLikeMe builds free online communities around specific disease states that allow patients to share structured health information, including their own outcomes, treatments, and symptoms. Rather than creating a marketing tool that drives consumers to a drug through health information or branded marketing, UCB is going to use this Web 2.0 tool to gather data about epileptics, including whether or not they are currently on a UCB treatment.
"Drug companies get longitudinal outcomes data as well as achievements and intervention," said Benjamin Heywood, co-founder and CEO of PatientsLikeMe. "UCB wants to explore the comparative effectiveness of all the different therapeutics and interventions on the quality of life of epilepsy patients."
Think of it as a large-scale clinical study with thousands and thousands of patients.
Similar to Facebook, patients in this online community will have health-centered profiles; users will answer a series of questions to measure where they are at in their illness. "In the case of epilepsy, the program will help patients understand their experiences with seizures as well as the different interventions they are trying," Heywood said.
Digging That Data
Additionally, PatientsLikeMe will be studying drug safety, data mining and pharmacovigilance on UCB’s products and service within the community.
“This might be a first-of-its-kind partnership, where industry works with patients through social media to really understand drug safety and side effects in a way that they haven’t been able to before,” Heywood said.
At a time when pharma seems scared to death to have patients post adverse events on a public forum, this begs the question: How can USB get around the regulatory restraints and respond to patients through social media?
“We’re taking it head-on, and having a pharmacovigilance person in the community,” Heywood said. What’s makes this situation unique is that the company can garner much more data on adverse events and different dosages.
Heywood makes it clear that this is not a UCB community. This is a community that anyone can enter and share information about any treatment options or services-not just those provided by UCB.
The day-to-day control will be monitored and handled entirely by PatientsLikeMe, and that company promises a lightweight moderation model to encourage the community to comment freely. Transparency will play a big part on the site. PatientsLikeMe fully discloses exactly what it does with its data, who its sponsors are, and how it turns a profit.
“Our patients are excited that industry is partnering with us,” Heywood said. “Ultimately, for them, anyone willing to listen and engage with their disease is positive-particularly with the life-changing illnesses that we are working with.”
The site will officially launch in 2010.