The growing, global epidemic of data breaches—including those in healthcare—are making people gun shy about online services, including the exchange of medical records, according to a Census Bureau survey.
A 2015 Commerce Department survey of 41,000 households was light on healthcare specifics, but noted that consumers around the world use the Internet to send and store personal medical data, business communications, and even intimate conversations.
Its “most troubling finding” showed that households “had refrained from participating in certain online activities due to privacy or security concerns during the year prior to the survey,” according to a blog post about the survey by Rafi Goldberg, a Commerce Department policy analyst.
Those concerns stopped 45% of households from conducting financial transactions, buying goods or services, posting on social networks, or expressing opinions on controversial or political issues via the Internet, and 30% refrained from at least two of these activities.
The actions mirror those found in multiple previous surveys conducted specifically targeting healthcare patients.
In 2013, a National Cancer Institute survey published in the Journal of the American Medical Informatics Association found that nearly 1 in 8 people withheld information from a healthcare provider because of privacy and security concerns.
Surveys by the not-for-profit California Healthcare Foundation in 2005 and 1999 had similar findings.
The substantial rise in the number of people taking privacy protecting behaviors—from percentages in the low teens in the healthcare surveys to 45% in the Commerce survey—reflects “just the beginning of the pushback that data is the new oil,” said Pam Dixon, founder of the San Diego-based World Privacy Forum, a not-for-profit privacy advocacy organization.
She said there's a lot of healthcare information being gathered outside of the protections of federal privacy laws. "People are starting to understand that and it's making them nervous, understandably," she said.
In the earlier healthcare surveys, Dixon said, promoters of health information technology could “explain away” the privacy protecting behavior by dubbing those consumers as older “privacy fundamentalists.”
“But what these (Commerce survey) numbers indicate is they're not older, privacy fundamentalists; it's everybody,” Dixon said, adding that the fact that those numbers are growing means it's a problem. "We could have addressed this a decade ago, but we wanted to foster innovation. Now, we're in a pickle,” she said.
According to the latest survey, 19% percent of Internet-using households had experienced a data breach in the prior 12 months.
The use of mobile technology adds to an individual's data security risk profile, the survey found, with 22% of Internet-using households with a mobile data plan experienced a breach and 31% did if they used five or more devices to go online.