Time for 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. Selected Reasons for Pursuing Patient-Controlled Data.), 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 calls patient-powered research networks. But such patients have found no easy way to get copies of their electronic health records (EHRs).
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