BRIDGE: Patients as Research Partners
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 (1) how to bring the open-source movement to medical discovery, (2) how to activate citizen-patients for participation in medical research, and (3) how to incentivize scientists to share their data and disease models to accelerate biomedical discovery.
To spur new medical discoveries we must transform the way research is conducted, drawing on the wisdom and insights of patients and their families—the people most familiar with disease—and the data they can now collect about their health.
The past few decades have seen the emergence of affordable genomics, sensors, mobile phone cameras and apps and online tools that for the first time allow each of us to collect data on ourselves precisely and frequently. If we can invest in systems that make it possible to correlate all the insights and data that people can now collect on themselves with the clinical data our doctors collect, we can for the first time generate integrated natural history timelines of individual health and disease that can power transformational research.
Toward this goal, Sage Bionetworks, with support from the Robert Wood Johnson Foundation is building BRIDGE a web-based, open-source platform that will allow patients to provide their data and insights as research partners on the health problems 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 communities focused on defining the research question that matters most to patients and their families. Participants will be able to use BRIDGE’s consent tools and data portal to contribute their health data into open research projects such as those that Sage Bionetworks is enabling with its Synapse data repository and collaborative work space. The insights that come from the data will then be reported back on BRIDGE and also drive new rounds of research collaborations.
To shape BRIDGE’s development, Sage Bionetworks is collaborating with three health communities that each have unique use cases for the BRIDGE functionalities they need to run their own patient-partnered studies. These studies focus on Fanconi anemia (a rare inherited blood disorder), sleeping disorders and Type 2 Diabetes.
The Fanconi Anemia BRIDGE Study: creating 21st century approaches for FA people and their families to monitor their own health and for FA researchers to develop a better understanding of the biology surrounding key events in disease progression.
The Sleep Disorders BRIDGE Study: crowdsourcing a deeper understanding by and for the public using a mobile phone sleep app that will allow researchers to correlate sleep patterns with responses to available sleep medications.
The Type 2 Diabetes BRIDGE Study: understanding how a patient’s disease biology, decision-making, lifestyle are inter-connected to affect disease outcome.