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Consumers Want Control Over Own Health Data

But survey finds most willing to share their health data for financial considerations.

Most consumers want to control their personal health information and keep it confidential—unless, of course, they can make a buck off it.

That’s one of the surprising takeaways from a new digital health report released by Rock Health, the San Francisco-based venture capital firm that supports digital health startups. The 41-page report, A Tipping Point in Consumer Healthcare, is based on a survey of 4,015 consumers.

Rock Health queried consumers about their attitudes toward and adoption of various digital health tools and technologies like online health information sites, online reviews of health care providers, wearable health devices, mobile tracking devices, telemedicine and data privacy. Overall, in 2016:

  • 72 percent of consumers looked up health information online
  • 51 percent used online reviews to make health care decisions
  • 24 percent used wearable health devices
  • 22 percent used mobile tracking devices
  • 22 percent used telemedicine services

With so much personal health information now in digital form and accessible electronically, Rock Health asked consumers about their opinions on the privacy of health data generated by the new digital health tools and technologies, including data on their health history, physical activity and genetic makeup.

A resounding 86 percent of the surveyed consumers said they “agree” or “strongly agree” that an individual should control who has access to his or her health data. An equally high percentage of the respondents said they agree or strongly agree that he or she should know or be told what personal health data has been collected about them.

Yet, at the same time, most consumers said they are willing to share their personal health data under certain conditions. For example:
  • 77 percent of consumers agreed or strongly agreed that they would share their health data with their doctor if it meant they’d get better care
  • 63 percent agreed or strongly agreed that they would share their health data with medical researchers
  • 54 percent agreed or strongly agreed that they would share their health data in exchange for a discount on their health insurance premiums
  • 42 percent agreed or strongly agreed that they would share their health data in exchange for money

Who surveyed consumers would share data on health history, physician activity and genetics with also varied. Physicians topped a list of eight health care stakeholders with whom consumers would be willing to share personal health data. Second were family members followed by health insurers, researchers, pharmacies, drug manufacturers, government and health technology companies.
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