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.
There may be considerable scientific value in making new forms of health data available to researchers in medicine, public health and the social and behavioral sciences. Moreover, wider availability of these data might spark a new cadre of “citizen scientists” who can add to what traditional health researchers do. But for a variety of reasons it is not obvious how to make these data available for research. Private companies may lack the expertise or resources to conduct research; or they might face technical barriers that thwart making these data useable for research.
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 addressed include whether there are unique scientific, methodological or ethical issues involved in such research; how to handle intellectual property of research findings; how and where these data intersect with other forms of medical and public health data; data quality; and privacy and confidentiality.
We welcome your input on issues related to research using personal health data. We continue to collect citations, web-links and other pointers to information relevant to this domain. If you wish to send something please email it to: firstname.lastname@example.org
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