A variety of health-relevant parameters can now be easily captured via wearable devices, smartphones and other tools that may yield insights about personal and population health. Sensors on these devices are collecting ever-larger streams of data that have never been collected before on individuals—across the lifespan, throughout the course of health and illness and in geospatial context. Yet the fields of behavioral, social, clinical and public health research still largely rely on traditional sources of health data such as electronic medical records, clinical trials funded by pharmaceuticals or the NIH, and public health data from periodic surveys or reports from surveillance systems.
The Health Data Exploration Project, led by the California Institute for Telecommunications and Information Technology (Calit2) and with support from the Robert Wood Johnson Foundation is exploring how to bridge the “worlds” of health researchers, the set of mostly private and often small technology companies that hold these data, and individuals who may want to donate their own health or medical data. Issues to be addressed include unique scientific, methodological and ethical issues involved in such research; how and where these data intersect with other forms of medical and public health data; data quality; and privacy and confidentiality.
Principal Investigator: Kevin Patrick, MD, MS
Co-Investigators: Matthew Bietz, PhD and Cinnamon Bloss, PhD
Robert Wood Johnson Sponsors: Lori Melichar, Stephen Downs, Kerry Anne McGeary