Most Consumers Want Their Health Data Shared Only With Permission Or Not At All

Gen Z and Millennials are more than twice as likely than Baby Boomers to indicate a willingness to download a COVID-19 contract tracing application to trace and monitor infections and notify others that may have been affected (65% vs. 30%), according to new research from health agency holding company W2O Group.

Control, anonymity and the ability to delete data increased the likelihood that consumers surveyed would download the contact tracing app.

The “Consumer Attitudes on Health Care Data Uses and Privacy” study was conducted in two waves — before and during the COVID-19 pandemic — to understand the overall perceptions of data privacy, gain insights into consumer awareness about data usage, and better understand consumers’ willingness to share health data.

The findings indicate that before people will be confident in sharing their health data, they need education and information about how their data will be used. Consumers want control over their health data, including a permission-based system to share data, and the ability to opt out at any time. Six in 10 (61%) state that they do not benefit from companies collecting their data.



Further, 70% of participants said they believed that health data should either not be shared or shared only with their permission. Unaided, 34% of respondents were aware of insurance companies collecting their health data, but only 17% identified search engine companies and 5% correctly stated health websites and applications.
While 44% of health data is sold to advertisers to market healthcare products to consumers, only 11% think this is an acceptable practice.

“Data is essential to driving progress and innovation in healthcare,” says Dan Linton, Global Data Privacy Officer for W2O. “The COVID-19 pandemic and interventions such as contact tracing and related technology applications have created an urgent need for companies to provide greater clarity around how health data is used.”

Consumers also care most about the altruistic purposes of health data use. One in two only want their health data shared if they know it would be used to improve healthcare outcomes for others.  Only 24% of respondents believe data is collected to develop new therapies and 29% believe it is being used to improve healthcare outcomes. As a result, organizations should clearly outline how they are sharing and using health data, and how it can advance public health, recommends report authors.

The study was conducted via  a 20-minute quantitative survey in September 2019 and a 25-minute online quantitative survey in May 2020 with more than 1,000 consumers who broadly represent the overall U.S. population. Find the full report here.

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