The concept is purposefully simple: biopharmaceutical companies and academic groups provide data sets from past clinical trials, and anyone with an internet connection can go to the website, register, and download the amassed data for their own research. SAS, the business analytics company, is providing the web platform and functionality for Project Data Sphere, pro bono.
"Provided you're not on the criminal register, you'll have access," says Charles Hugh-Jones, a member of the LSC, and chief medical officer at Sanofi US. Access is not dependent on a valid research proposal or academic credential, because "we can't judge whether someone's got the right research proposal [for fighting cancer], and I would challenge any one committee to have broad enough knowledge to say where data could go in the hands of different groups of people."
Data providers will retain ownership and existing IP, but people using the data can build on it, to produce their own intellectual property. In the second phase of the project, SAS will provide a built-in analytics capability and forum, so data downloaders can run analytics without leaving the Project Data Sphere website, and talk to each other. Hugh-Jones hopes to eventually start having data user conferences, to promote further collaboration.
Finally, Project Data Sphere presents a positive PR play for pharma and academia. Organizations gifting data are prioritizing the discovery of new cancer treatments over business concerns. For academia, it's a shield against the swords clamoring for the release of data generated via tax dollar-funded NIH grants.
Hugh-Jones is confident that others will contribute data after the initial launch. During a panel on collaboration and transparency at the 10th Annual SAS Health Care & Life Sciences Executive Conference last month, a SAS employee in the audience suggested fomenting an Occupy Clinical Trials movement to advocate for greater data transparency. Indeed, it will take many loud voices and a sustained effort to liberate clinical trial data from life sciences organizations. But cancer, directly or indirectly, affects everyone's lives. While incremental progress has been made, people with cancer still have disturbing similar outcomes—in terms of disease progression and death—as they did 30 years ago. Project Data Sphere is a necessary, all-hands-on-deck approach to tackling the disease.
Ben Comer is Pharm Exec's Senior Editor. He can be reached at firstname.lastname@example.org