Health-related data that is created or gathered by the patient is known as “patient-generated health data” (PGHD). Patients are increasingly collecting and sharing PGHD with their providers, health plans, and patient support networks, through various e-health tools, such as mobile apps, personal health record (PHR) systems, and online patient-powered research networks (e.g., PatientsLikeMe) and registries (BioBank).While federal laws and regulations govern the use and disclosure of personal health information held by “covered entities” (i.e., physicians, hospitals, and health plans), PGHD that is created and/or shared on sites like PatientsLikeMe, 23andMe, and BioBank may not be protected in the same way.
For more information on patient-generated health data, including its benefits, how it's protected, and how it differs from other types of health data, we invite you to access our new products below.
Myth Buster: All patient-generated health data has the same privacy and security protections.
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