July 29th, 2008 by dwentworth
The Wall Street Journal has an article today featuring Marty Tenenbaum and CollabRx, one of our partners in the Health Commons project. The piece, Putting Drug Development in Patients’ Hands, explores how patients are using the Internet to take the reins in developing drugs for disease — especially rare and neglected diseases for which drug discovery has yet to prove commercially viable. Among the strategies patients are pursuing: funding their own “virtual” pharmaceutical companies, tasked to specific diseases.
One patient profiled in the article, Bonnie J. Addario, is a lung-cancer survivor who turned to CollabRx for help. Addario began the search for a cure using the traditional approach. After raising $800, 000 and distributing it to researchers, she was struck by the realization that despite the hard work going into the research, lung-cancer survival rates hadn’t changed in 40 years. Addario and her husband convened a conference with researchers to uncover hidden roadblocks:
[The] group identified a number of problems that hinder progress toward a cure. Among them: Researchers didn’t know what others were doing, tissue and blood specimens needed for experiments weren’t centrally located or shared, and the findings of experiments weren’t integrated to help assess what the key priorities should be.
The Health Commons, also discussed in the article, was launched to help make it easier for anyone to pull together the resources necessary for advancing disease research, without the legal wrangling commonly associated with securing access to research, data and unique research materials like cell lines. This includes implementing standardized, machine-readable agreements to facilitate intra-academic and academic-industry transfer of biological materials.
“The Health Commons is creating the legal and technical foundation for a friction-free, point-and-click marketplace like Amazon or eBay, so disease research isn’t bogged down by needlessly complicated, costly legal negotiations,” explains John Wilbanks, who leads Science Commons. “Some resources may be freely available; others may be available for a fee. But if it’s in the Health Commons, it will be a swift, permissionless transaction, because permission will have already been granted.”
To learn more about the Health Commons, visit the project page, where you’ll find a white paper co-authored by Wilbanks and Tenenbaum, plus a 6-minute video introduction to the project.