The Data Sharing Effort to Cure Cancer

Imagine a world where the cures for diseases are discovered with the speed of software development.

Open source projects like the Linux operating system and the Firefox web browser are testament to what can be accomplished when developers share their work with an invested community. Sites like GitHub, Bitbucket, and Beanstalk grow these communities and provide places to store projects and facilitate communication between contributors. With more than 10,000 public projects, over 3.5 million users, and having created unique environments to foster innovation, these sites have been a paradigm-shifting success. But could similar models work for something outside the programming world? Could they cure cancer?

While it is not as simple to create new medicines, there are efforts underway to better share information in the quest to discover life-saving treatments.

Recognizing that mortality rates for cancer have not improved in 40 years and that the research to find cures is too slow, the CEO Roundtable on Cancer’s Life Sciences Consortium, a group of leaders from life science organizations, have created a data-sharing platform resembling open source tech sites. Known as The Project Data Sphere initiative, the platform is designed to provide one place where the research community can broadly share, integrate, and analyze historical, patient-level cancer phase III comparator arm data from commercial and academic organizations. The Project Data Sphere initiative aims to create a diverse global community focused on advancing cancer research and finding solutions for cancer patients. Comparable communities in the tech industry formed in an effort to combat the inefficiency of information silos and show that quantitative speed can lead to qualitative results.

One way this new data-sharing platform might speed up the search for treatments is by making clinical trial data available from clinical studies, whether outcomes were positive or negative. All clinical trial results, whether confirming or disproving hypotheses, provide important insights that inform the next step in research. Scientists and researchers across the innovation ecosystem can build off these results, potentially allowing for more rapid innovation. Furthermore, where one scientist perceives a failure, another might see a breakthrough, and sharing data can only increase the likelihood of discovery.

However, not all data is created equal. Data shared between developers is rarely a threat to individual rights, but sharing clinical trial data runs the serious risk of violating the privacy of a person’s health. Last summer, the Pharmaceutical Research and Manufacturers of American (PhRMA) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) adopted joint Principles for Responsible Clinical Trial Data Sharing. The Principles outlined specific safety measures, including oversight boards to ensure the scientific integrity of research conducted with industry clinical data and the protection of patient privacy. While the majority of clinical studies are rooted in protocols that scrub research data of any personally identifying qualities, there are circumstances—particularly surrounding rare diseases with small sample groups—where indiscriminate data sharing could violate a patient’s privacy.

All clinical trial data uploaded in the Project Data Sphere platform has been prepared by the respective study sponsors. Each data provider is responsible for de-identifying the data in accordance with applicable laws. All interested in gaining access to the data and analytic tools will complete a user application and agree to terms of use.

The project will officially launch in the second quarter of 2014 and be among several data sharing initiatives leading to new opportunities for discovery. The Project Data Sphere initiative believes there should be multiple initiatives to explore data sharing because it is very likely there will not be a one-size-fits all approach. When the Project Data Sphere initiative and other similar initiatives succeed, we could soon live in a world where whole communities build new treatments and cures.