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  • Time for a Patient-Driven H...
    Mandl, Kenneth D; Kohane, Isaac S

    The New England journal of medicine, 01/2016, Letnik: 374, Številka: 3
    Journal Article

    For over 20 years, getting patients electronic copies of their health records has remained an elusive goal. Why have the barriers been so high? And what is the path to a patient-driven health information economy? As patients strive to manage their own health and illnesses, many wonder how to get a copy of their health data to share with their physicians, load into apps, donate to researchers, link to their genomic data, or have on hand just in case. To seek diagnosis or better care (see table), many patients are taking steps outside traditional doctor–patient relationships. Some join 23andMe to obtain genetic information. Others bring data to the Undiagnosed Diseases Network at the National Institutes of Health (NIH). Patients are coalescing with others with the same disease in what the Patient Centered Outcomes Research Institute . . .