Stanford, CA—At today’s Stanford Medicine X conference, Stephen Friend, MD, president of Sage Bionetworks announced funding and partnerships with three health communities for the development of BRIDGE, a cloud-based collaborative science platform designed to incorporate open data, patient wisdom and public involvement into biomedical research.
Friend, a visionary in open science, started Sage Bionetworks in 2009 to accelerate biomedical research using open systems, incentives and interoperable standards. Until now, Sage Bionetworks has focused the majority of its resources on developing Synapse, a computational “geek’s sandbox” in which researchers can aggregate and analyze data and share results in real time.
Now, supported by a two year $1.9 million grant from the Robert Wood Johnson Foundation, Sage Bionetworks is well positioned to start the development of BRIDGE. BRIDGE is a second key piece of IT infrastructure that Friend and his team see as essential for empowering citizens to share and track their data, to partner on research and to fund the projects that matter most to them.
On BRIDGE, citizens, patients and researchers will be able to use online tools that connect people, their data and their stories to build vibrant online communities focused on defining the disease or health research that matters most to patients and their families. Participants will be able to use BRIDGE’s online consent tools and data portal to contribute their health data in to open research projects such as those that Sage Bionetworks is enabling with Synapse. The insights that come from the data will then be reported back on BRIDGE and also drive new rounds of research collaborations.
Stated Friend, “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.”
To shape BRIDGE’s development, Sage Bionetworks is collaborating with three self-funded health communities that each want to run their unique patient-partnered projects. These pilot efforts are focused on diabetes, Fanconi Anemia (a rare inherited blood disorder) and sleeping disorders. Although tackling very different areas of disease and health, all three efforts will use BRIDGE to learn more about the types of medical research that can benefit from the wisdom, insights and data of citizens and patients and the incentives that will draw people to contribute their energy and stay connected to open research projects.
The Fanconi anemia disease community wants to use BRIDGE to pilot online community resources and 21st century approaches for patients to monitor their own oral health for the first signs of head and neck cancer for which Fanconi anemia patients are at very high risk. Explains Amy Frohnmayer, a Fanconi Anemia patient and leader in the planning of the Fanconi Anemia BRIDGE project “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.”
The Diabetes BRIDGE project will obtain an integrated view of Type 2 Diabetes by taking into account how a patient’s decision-making, lifestyle and disease biology and affect disease outcome. Reflects Anders Rosengren, a researcher-physician at Lund University who is involved in the study, “Taking part in the BRIDGE project is a unique opportunity to see how active involvement of patients with type 2 diabetes in research may benefit individual disease management and facilitate the discovery of new treatment options. Type 2 diabetes should be an ideal disease in this context, since active patient involvement is a cornerstone in modern diabetes care."
BRIDGE’s sleep project will invite the greater than six hundred thousand current users of the free mobile phone iSleeping app to join a study that will monitor and report how different available sleep medications modulate individual sleep patterns. Sleep researchers and iSleeping app creators Professor Damien Leger and Maxime Elbaz are excited about the idea of using their app in suc a study. States Leger, “This BRIDGE project on sleep will end up being a great example of what citizens can contribute to cutting edge science. Poor sleep is a growing epidemic that all of us get harmed by and therefore we should all help to contribute to the cure.”
"To improve our understanding of disease, we must learn from patients' own insight and experience," says Nancy Barrand, Senior Advisor for Program Development at the Robert Wood Johnson Foundation. "By partnering world class researchers with patients, Bridge has the potential to accelerate biomedical discovery and solve the health problems patients most care about."