Imagine for-profit organizations sharing data to solve significant health problems. Day-to-day adversaries getting together to create a massive pool of clinical data that can help researchers one day find a cure for the most puzzling diseases.
It’s no longer a dream. With Project Data Sphere, an initiative of the CEO Roundtable on Cancer’s Life Sciences Consortium, researchers from life sciences organizations, hospitals and other institutions can share and analyze cancer research data gleaned from across the industry. The result? An impressive pool of data designed to jump-start cancer research.
Project Data Sphere was a topic during a data transparency discussion at the 2014 SAS Executive Forum. Dr. Kald Abdallah, vice president of immunology for Sanofi US, talked about the project and the need for more ambitious cancer research. While the mortality rate for illnesses like heart disease continue to drop, cancer death rates are climbing.
Part of the reason for this, Abdallah said, is because of the decentralized way that research is conducted. Pharmaceutical companies and research organizations have been doing individual bits of research, but it was difficult to share information.
“Cancer is very complicated, and we’re not finding solutions fast enough,” Abdallah said. “The question is ‘How do we change that paradigm so that we can find solutions – and improve cancer care – faster?’”
The answer came when the CEO Roundtable on Cancer established Project Data Sphere as a way for pharmaceutical and life sciences companies to share their clinical trial data. Once a proprietary asset, this information is being aggregated, and in April, it will be available for researchers across the globe. SAS plays a role in Project Data Sphere, providing data hosting and analytics tools to researchers.
“The only commitment we ask from researchers is that they acknowledge that their findings came from Project Data Sphere,” Abdallah said. That’s not much to ask for, he said, given the scope of the program. Now, researchers in China and India can use the same data as North American researchers, adding a new dimension to cancer research.
Cancer is only one area where increased data transparency is changing lives. Mike Wirth is a special adviser on business and technology reengineering to Virginia’s Secretary of Health. Wirth works with state agencies across Virginia’s local governments to aggregate information to serve under-privileged children.
Part of the Comprehensive Services Act for At-Risk Youth and Families, the program administers a fund that purchases services for at-risk children throughout the state. Their goal, Wirth said, is to ask critical questions and improve the lives of Virginia’s youth.
“We have to know several things,” Wirth said. “Are services available to the children who need them? Are services being provided in accordance with each child’s needs? Are fund being spent wisely? Are programs meeting measurable goals?”
In the past, answering those questions was difficult with 95 counties and 38 independent cities that can have local pools of data about the services provided to children in those areas. To solve the problem, Wirth and his team first took on a pilot project that helped proved the concept to both the general assembly and the localities. From there, they established a baseline of expenditures to understand “typical” expenditures for specific services.
Once they had that baseline and an integrated data set, the next phase was to look for outliers. Through data visualization, Wirth’s team can “see” an individual child and as well as his or her support network. If the child has a darker color, it means they are more at risk. A lighter color means that the data shows that the child is getting necessary support.
“I can start to slide the time [metric] and see kids getting brighter or darker,” Wirth said. “If their symbol gets darker, I can drill in and see what’s happening there. Is it that they are in a bad situation, or is the provider overburdened? It’s a really powerful way to visualize and see the data.”