Despite the billions of private and federal dollars spent on cancer research each year, it is estimated that nearly one in every three people will hear a cancer diagnosis in their lifetime.
Project Data Sphere, a digital library-laboratory platform, collects data from clinical trials and makes it available to the public for secondary analysis in the hopes of finding a cure.
However, the data comes from an unlikely partner—big pharma.
“There are some companies out there that see this as they’re giving away their intellectual property and, to an extent, they are,” says Matt Gross, director of the SAS Health Care and Life Sciences Global Practice. “If nothing else, they’re giving away literally billions of dollars of time, money and effort in the collection of this information and making it available to the public.”
Gross adds that this willingness amongst competitors to share proprietary information for the greater good reflects an evolution in healthcare. But it took a lot of work to even get representatives from competing companies in the same room.
Martin J. Murphy, founding chief information officer of the CEO Roundtable on Cancer, which funds Project Data Sphere, says pharmaceutical companies were initially worried about counterintelligence if they were to set a meeting.
“There was a lot of fear, but not a lot of basis for it,” he says. “You could see people were getting uncomfortable. ‘We never shared that data. Why should we start?’ ”
It took a Department of Justice representative to sit in on a meeting with the CEO Roundtable on Cancer for the pharmaceutical companies to realize “certain things can and should be done together,” Murphy says.
The nonprofit launched Project Data Sphere in April 2014, and partnered with SAS to create an analytics toolkit. Third-party researchers, along with the general public, can log in to the platform and look through completed clinical trials for broader research beyond the pharmaceutical companies’ original intent for conducting the trials.
There are currently more than 900 authorized users on the platform with access to 49 datasets representing 27,000 patient lives across a broad array of cancer tumor areas.