When Tomasz Sablinski was working in pharmaceutical R&D, he was often frustrated by the demand for secrecy in the clinical trials process—a misdirected effort, he says, to keep competitors in the dark about what drug companies were up to. “The price you pay when you hide what you’re doing is you only get feedback from a precious few people,” he says. “There is very little new blood in the ideation process.”
Then Sablinski read an article about the open-source operating system Linux and he had an epiphany. “If said, ‘If computer coders can do open source, so can drug developers,'” he recalls. “You have to add patients to the mix, because they’re really the reason you’re doing drug development.”
So in late January, Sablinski and his company, Transparency Life Sciences, rolled out the beta version of a virtual community of physicians, scientists, and patients whose input is helping the company develop three drugs. The site (transparencyls.com), which is being managed by a handful of staff members in New York City and Boston, has only been live for a few weeks. But it has already attracted about 30 patients, who have been actively trading notes about their experiences and making suggestions for clinical trials, Sablinski says.
Sablinski hopes the population of registered users will balloon in the coming weeks, when Transparency begins reaching out to patient advocacy groups in the disease areas it’s working in: multiple sclerosis, peripheral vascular disease, and inflammatory bowel disease. “What we’re trying to do is channel this tremendous Web energy into helping us create experiments that will answer the right questions,” Sablinski says.
Here’s how it works: After people register as users on the site, they pick the drug development program that interests them, and then answer a series of questions about it. For example, users who enter the MS area identify themselves as either patients or researchers. Researchers are asked questions such as “Which patient population should be studied initially?” and then given choices such as “relapsing remitting” and “secondary progressive.” Patients, on the other hand, are asked to recount their experiences, as such: “Please think about medications you have tried for MS. Were you likely to need a lower or higher than usual dose?”
Sablinski says he plans to close out the question-and-answer period on the MS drug in the next two months or so, after which he will choose his principal investigators—possibly from the community of physicians that sign on to the site. From there, he and his team will design a clinical trial and go to the FDA for permission to run it, he says.
Transparency also has a strong social-media component. The site includes a forum where patients can ask questions about diseases and treatments. The forum is moderated by Lisa Abrams, who also answers private letters from patients and is creating a newsletter for patients and families. Abrams, a former drug-development consultant, received a business degree from MIT, where she specialized in studying how technology
