What determines whether people share digital health information? Context and opinion

Concerns about how digital health data will be used by commercial companies often collide with the potential benefits of using their services. A new study published in JAMA Network Open on Jan. 24 investigates why some users are more reluctant to share than others. 

Between search histories, fitness trackers and mobile phones, consumers generate considerable data that reflects their digital health. The researchers recruited 3,543 adults across the country in July 2020 and presented them with various scenarios in which a university hospital, pharmaceutical company or digital health firm wanted their digital health information. They also presented a range of reasons for requesting the information and varied the type of information.

The researchers found that just over half of respondents' preferences about sharing information were independent of the context provided, with 44 percent opposed to most or all data sharing. Forty-five percent of respondents' preferences changed with the context of the scenario. 

In terms of which type of data respondents were most comfortable sharing, more regulated information like EHR data was less sensitive than financial data or data from passive surveillance cameras. 

The research also revealed that white, high-income respondents were more likely to be in the data sharing averse category than poorer people of color.

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