Checking up on consumer generated health information

Whether it’s a website where people diagnosed with the same medical condition can share their stories or an app to find out how long it will take in the gym to burn off a Macadamia Mania Ripple sundae, consumers are taking their health in their own hands -- and generating a massive amount of digital data in the process.

Consumers are tracking their diet, exercise, medications, and symptoms online and even downloading their medical records and family histories into apps and websites. Many of these products and services help to empower consumers to be healthier, but what happens to all that data? Who has access to the information and what are they doing with it?

Those are just some of the issues on the agenda as the FTC continues its Spring Privacy Series on May 7, 2014, with a seminar on Consumer Generated and Controlled Health Data. We’re bringing together industry experts, consumer advocates, technologists, and researchers to talk over topics like:

• What types of sites, products, and services are consumers using to generate and control their health data? What benefits can they offer people?
• Are companies sharing the consumer information they collect? If so, with whom and for what purposes?
• What actions are companies taking to protect consumers’ privacy and security?
• What do consumers expect from these companies about privacy and security protections?