Though it may be a slow week for government entities, other organizations around the United States are moving full speed ahead. Recently, president of Sage Bionetworks Dr. Stephen Friend attended the Stanford Medicine X Conference and announced his company’s plans to provide funding and collaborate with three health organizations in an effort to develop BRIDGE. This cloud-based technology does just as its name suggests and bridges open data, patient knowledge, and public participation to provide biomedical research.
The company was founded in 2009 to enhance such research by way of open systems, motives, and interworking standards. Yet, up to this point, Sage Bionetworks has made Synapse its main focus. While remaining in line with the “research sharing” theme of the company’s products, Synapse, affectionately referred to as the “geek’s sandbox,” allows researchers to exchange data, analyze it, and swap their results on a real-time basis.
Given its Robert Wood Johnson Foundation-provided two-year, $1.9 million grant, Sage Bionetworks can continue development of their sharing prowess by working on BRIDGE. After all, the infrastructure is the second piece of its kind that the Sage Bionetworks team deems necessary for users to share data, to collaborate on research, and to fund important science.
Users will be able to utilize BRIDGE’s set of online tools to connect with other users and share information and stories, which will ultimately contribute to the build-up of Web-based communities that focus on providing important disease- or health-related research. Just as with Synapse, patients and researchers alike will be able to use BRIDGE to collectively contribute their findings to open projects.
Friend recently displayed his excitement for the platform, noting the empowerment BRIDGE will provide patients. He said, “Biomedical research needs to shift and proceed with the sense of urgency that each of us experiences when we become patients. And it needs to empower patients with the voice and the tools they need to manage their health, understand their disease, and contribute to research. The BRIDGE platform and its first pilot community projects will give us successes and lessons that help us understand the value of direct citizen participation in open research.”
The health communities already set to utilize BRIDGE to run their own projects include those that support research for Fanconi anemia, diabetes, and sleep disorders. As a Fanconi anemia patient and an integral cog in the startup of the Fanconi anemia project, Amy Frohnmayer notes the advancements that BRIDGE will provide patients in taking control of their diseases: “People who live with a chronic, unpredictable, and life-threatening condition often feel a wrenching lack of control over their illness trajectories. As an adult with Fanconi anemia, I have spent a lot of my life waiting and passively hoping for research to produce helpful solutions. The BRIDGE project gives people with FA an active voice in the directions of research that matter most to the continuation of our lives. That means more than can possibly be measured, because that is the gift of hope itself.”
Edited by
Alisen Downey
