Consumers are reluctant to hand over personal data about their location, social media use and finances for health-related use, according to a new study published in JAMA. 

The research, which compared consumers' willingness to share personal data to their willingness to share information from their electronic health record, found that patients were more open to sharing steps from an activity-tracking app.  

Consumers put a lot of weight into the source of the information. 

"These findings suggest that although consumers’ willingness to share personal digital information for health purposes is associated with the context of use, many have strong underlying privacy views that affect their willingness to share," authors of the study wrote. "New protections may be needed to give consumers confidence to be comfortable sharing their personal information."

TOP-LINE DATA 

Users were asked to rate their willingness to share personal digital information from one to five, with five representing a definite willingness to share. 

Consumers were least likely to share their data from financial institutions with a coefficient of -0.56 compared to EHR data. Participants were also less likely to share the places they visited (coefficient of -0.28), communication with people on social media (coefficient -0.20) and their internet search history (coefficient -0.20).

Users were willing to share their walking data (coefficient 0.22) and had no difference in willingness to share their genetic data. 

On a scale of weighted importance from 0% to 100%, users reported that information type was the most important factor (59.1%), with the end user (17.3%) and the use (12.3%) following. 

Researchers found that 55% of consumers said their willingness to share information was "largely independent of context." Only 13% of users were in favor of the highest level of data sharing, and 33% were opposed. Meanwhile 10% were universally opposed to all data sharing.

HOW IT WAS DONE 

The survey included answers from 3,543 participants. Women made up 53% of the total participants. Researchers note that 21% of survey takers identified as Black and 24% identified as Hispanic. Individuals over 60 represented 36% of the total study. 

Consumers were recruited from the online resource Ipsos KnowledgePanel, which is designed to include a representative panel of the U.S. population.

The study was conducted between July 10 and July 31, 2020. 

THE BACKGROUND 

As consumer health data has become more plentiful, there are more conversations around incorporating that data into care. 

A 2020 poll by health data intelligence firm W2O found that U.S. consumers wanted to understand how and why their personal data was being used by organizations. The poll found that older survey takers and those with less education were the least likely to share personal data. 

During the COVID-19 pandemic, there have been multiple efforts around using consumer data for contact tracing. However, the effort to collect personal health data to help combat COVID-19 was not without its critics.