Real Names Discovery Pilot
Why the Real Names Discovery Pilot Must Get Done
Imagine a world where every patient could plot his/her own living “contour map” of health: where treatment or lifestyle changes could shape the future of the map and where the maps of many patients could combine to show as a society how our decisions today are likely to affect our health tomorrow.
The Real Names Discovery Pilot (RNDP) is a pilot set to last five years that seeks to test the feasibility to construct such living patient “contour maps” that can then be used to inform and guide health decisions. To do this, the pilot will incorporate the following three transformational ingredients:
Moving beyond the current non-sharing approaches to data:
RNDP will place all project data and analysis tools into the public domain to foster crowdsourced solutions, collaborative competitions and direct patient involvement on the project’s research questions. By combing technologies to collect patient data and over time increasing the number of patients and the number of diseases, we will construct a large patient cohort that is open for all for broad exploratory use.
RNDP will determine patients’ enthusiasm to have their names connected to their data, and will demonstrate that we as humans CAN share our data and show that benefits exceed the risks.
Collecting the right data in the right way and often enough:
RNDP will aggregate many different types of patient data, a prerequisite for developing personalized data-driven maps of personal health. Data for the RNDP will include patient-reported information (symptoms, side effects, quality of life), whole genome sequence and associated “omic” data, and blood sample analysis data. Central to this project will be the longitudinal collection of samples/data. Data analysis will be performed in a transparent, iterative and evolving manner so that results can lead to new questions and foster a first-in-kind statistical vector field analysis.
Why have regimented roles of who is a data generator, analyst or funder?
The RNDP will be structured to allow for community building and collaboration across patient groups, researchers and funders so that all participants have the opportunity to play multiple roles on the pilot. RNDP is one of the three pilot projects that will make use of BRIDGE, a web-based platform: (1) where scientists can report their findings in language that is meaningful for patients; (2) where patients can pose their own research questions back to the scientists and so guide future inquiry: the questions that they think, in answered, could impact their lives, and (3) where studies can be funded by the patients asking the research questions and where innovative “scholarship” funding strategies can be posted to support the funding of new studies. In this new discovery system medical research is democratized, everyone relies on everyone and information becomes non-hierarchical and driven by multiple perspectives to catalyze a trust network and offer a shared value.