Changing the Conversation About Sharing and Using Health Information

Robinson+Cole Data Privacy + Security Insider

Some app developers know more about our health than our doctors do. Take, for instance, FitBit, which is attached to our wrist and measuring in real time our temperature, our heart rate, our steps and whether we have had enough exercise for our age in a day.

Some people sleep with their phones on their pillows so they can monitor their sleep habits. Some people have apps, such as Bump, to determine when they are the most fertile and should do the thing that you still have to do to get pregnant. Some apps know when you are pregnant before your body even knows. 23andMe knows your entire DNA genome, and your family’s as well. None of this highly sensitive data is protected by law. When you consent to download the app, provide the information to the app developer, or send a DNA sample, that company has the right to do whatever it says it can do in its privacy policy.

Consumers are providing highly sensitive health information to app developers without a second thought. Millions and millions of health apps are downloaded by individuals for convenience so they can get immediate feedback on a specific data point. For some reason, individuals do not like their neighbors to know about certain things, but they have no problem with sharing intimate details with random app developers.

This health information is not protected by HIPAA, yet it is being shared willingly and freely by consumers (with consent through the Privacy Policy). Wouldn’t it be great if this information could be shared with health care providers to treat individuals and increase the quality of health care delivery for the entire population?

The paradigm must be shifted so consumers get the benefit of the newest technology, treatment is more convenient for patients, real-time data are being used for diagnostic purposes to provide the highest quality patient care possible, and the massive amount of information that consumers are freely giving to private companies could be used for population health, instead of the years and years it takes for Institutional Review Boards and research studies to get through the system. We need to figure out how to leverage technology and consumer convenience to drive research and outcomes. The medical community is getting left behind because consumers want answers in real time, are used to getting what they want in real time, and will bypass the medical community if it can’t provide that convenience and value in real time. Consumers’ behavior with health apps is instructive on how to engage patients for their own treatment and for research purposes. The paradigm is shifting, and looking at how consumers are behaving with health apps will shape how medical treatment is, and should be, provided in the future.

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DISCLAIMER: Because of the generality of this update, the information provided herein may not be applicable in all situations and should not be acted upon without specific legal advice based on particular situations.

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