As healthcare providers increasingly depend on personal health data to fuel such services as COVID trackers, consumers are concerned about how much control they have over that data, according to a new study from W2O.

Seven out of 10 respondents to the survey (70 percent) believe that health data collected about them should either not be shared or shared only with their permission.

There were several reasons why so many people were hesitant to share their health data. Almost half (47 percent) said that they were simply skeptical about data privacy in general. Nearly as many (45 percent) said they feared insurance services could use the information collected to deny services or charge more, and 44 percent thought that by sharing their health data, they would be opening the door to making other personal information accessible.

Another barrier: consumers are often unclear about who is collecting their health data or how it is being used. While over a third of respondents (34 percent) said they were aware that insurance companies collect their health data, only five percent knew that health websites and applications often do the same.

Older consumers tended to have the most reservations about health data security. For example, fewer than 30 percent of Baby Boomers (ages 55 to 75) said they would be willing to download a COVID-19 contact tracing application, compared with about 65 percent for Millennials (ages 25 to 39) and Generation Z (ages 18 to 24).

Several factors can raise the level of confidence consumers have in how the security of their personal health data is handled. The ability to opt-out was cited by 44 percent as a measure that would make them more comfortable with sharing their data. Information about how the data will be used or analyzed was also important (cited by 41 percent of respondents), as was proof that the data shared would be anonymous (40 percent).

The altruistic purposes of health data use also mattered to respondents. Nearly half of them indicated that they would only want their health data shared if they knew it would be used to improve healthcare outcomes for others.

A company’s reputation as regards data privacy also has effects beyond the willingness of consumers to share their health data. Over two-thirds of respondents (68 percent) said they factor in a company’s reputation for privacy protection when making decisions to engage with the organization.

“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,” said Dan Linton, Global Data Privacy Officer for W2O. “To achieve the advances possible to address COVID-19 and beyond, organizations must proactively consider and respond to these privacy concerns.”

The W2O study was conducted as 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.

To see the full study, click here.