Citizens as partners in the use of clinical data - Data

The current push towards patient engagement, when clinical researchers trace the outcomes of using pharmaceuticals or other treatments, is a crucial first step towards rewiring the medical-industrial complex with the citizen at the center. For far too long, clinicians, investigators, the government, and private funders have been the key decision makers. The citizen has been at best a research 'subject,' and far too often simply a resource from which data and samples can be extracted. The average participant in clinical study never receives the outcomes of the study, never has contact with those analyzing the data, never knows where her samples flow over time (witness the famous story of Henrietta Lacks), and until the past year didn’t even have access to the published research without paying a hefty rental fee. This is changing. The recent grants by the Patient-Centered Outcomes Research Institute (PCORI) are the most visible evidence of change, but throughout the medical system one finds green shoots of direct patient engagement. However, we must not stop at the idea of engaging patients to tell us about their outcomes – the promise of patient-centered research is not simply to survey people about their health, medicines, and results. This is instead the first pace in a three-step dance: patient engagement into clinical study, syndication of engaged patient data to networks of researchers who can analyze and re-analyze the data, and a feedback loop of results to the participants ... Sage Bionetworks is a 501(c)(3) nonprofit biomedical research organization created to accelerate biological understanding by promoting collaborations and enabling community-based discovery. At Sage Bionetworks, we believe in the importance of iteratively generating and testing novel hypotheses transparently and collaboratively. We also believe that successful biomedical research requires a cultural shift and the active participation of all stakeholders. We are re-imagining the role of citizens in research and are building a software platform, called BRIDGE, to empower them to contribute both their data and expertise to research as they see fit ..."