Privacy, security issues cause consumers to distrust HIT

Most patients withhold health information, fearing breaches or information sharing.


A new survey of more than 12,000 Americans has found that 57 percent of consumers are skeptical of the overall benefits of health IT such as electronic health records, mobile apps and patient portals, in light of recent high-profile data breaches and a perceived lack of privacy protections by providers.

The national survey, conducted from September to December by market research firm Black Book, also revealed that 70 percent of Americans distrust health technology. That’s significantly lower than a 2014 survey by the Office of the National Coordinator for Health Information Technology, in which only 10 percent by respondents said they distrusted HIT.

“We saw that distrust number in particular with consumers and mental health records and pharmacies,” says Doug Brown, managing partner at Black Book. “They feel that there’s some kind of leakage of information, even if it’s not cybersecurity-related.”

Specifically, consumers expressed concerns that their pharmacy prescriptions (90 percent), mental health notes (99 percent) and chronic condition (81 percent) data is being shared without their consent beyond their chosen provider and payer to retailers, employers or the government.

Also See: FTC steps up protection of consumer health data

At the same time, 93 percent of respondents believe the security of their personal financial information is at risk, given the fact that high-deductible Affordable Care Act plans and co-pays have more banking and credit card data passing from providers.

As a result of privacy and security concerns, 89 percent of consumers that had a 2016 provider visit reported withholding health information during those visits. Further, 87 percent of consumers surveyed indicated an unwillingness to comprehensively divulge all their medical information. By contrast, 66 percent of respondents in 2013 were willing to divulge all personal health data to achieve better care.

In addition, 69 percent of consumers believe that their current primary care physician does not demonstrate enough technology prowess for them to trust divulging all their personal information.

However, results of Black Book’s survey fly in the face of a new analysis which found that concerns among consumers about healthcare data breaches have not led them to withholding information from providers.

Using a pooled cross-section of data from the 2011 and 2014 cycles of the National Cancer Institute’s Health Information and National Trends Survey, researchers assessed whether privacy and security concerns are associated with the likelihood of patients withholding personal health information from a provider.

Results published in the Journal of Medical Internet Research showed no difference regarding the effect of privacy and security concerns on withholding behavior between 2011 and 2014.

Nonetheless, given concerns around the privacy and security of personal health information stored in digital format, researchers conclude that it is important for providers to “understand how views on privacy and security may be associated with patient disclosure of health information” and that “providers could ameliorate privacy and security by focusing on the care quality benefits EHRs provide.”

Still, Brown believes Black Book’s 2016 survey findings are more reflective of the current consumer mindset and their unwillingness to share all their medical information with clinicians, versus what the 2011 and 2014 Health Information and National Trends Survey indicated.

All you have to do is look at the skyrocketing number of healthcare data breaches over the past couple of years, he says, and you can see why consumers are increasingly wary about sharing their health information.

“High-level data breaches, and now ransomware, are becoming mainstream,” adds Brown. “Consumers may have had concerns before, but now it’s constantly in the news, with millions of American impacted by breaches like Anthem.”

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