On May 7, 2014, the Federal Trade Commission staff hosted a seminar on Consumer Generated and Controlled Health Data.
The seminar addressed the increasing role consumers are taking in managing and generating their own health data. For example, consumers are researching their health conditions and diagnosing themselves online. Consumers are also uploading their information into personal health records and apps that allow them to manage and analyze their data, and utilizing connected health and fitness devices that regularly collect information about them and transmit this information to other entities.
Speakers discussed the privacy concerns, as well as the potential benefits arising from the movement of health data outside the traditional medical provider context. They talked about the types of websites, products, and services that consumers use to generate and control their health data, and they discussed consumers’ expectations regarding privacy and security protections, as well as the actions that some companies take to protect consumers’ privacy and security.
You can view an archived webcast of the event. A transcript of the proceedings is also available below.
The Commission is accepting written comments on issues related to this workshop until June 9, 2014. Please see below for instructions on how to submit comments.