Patients want to control the privacy of their health info

Patients desire granular privacy control over their electronic health information, according to research published online Nov. 26 by the Journal of the American Medical Informatics Association.

“One barrier that has been identified in the acceptance of health technologies such as EHRs is concern about privacy and security,” wrote lead author Kelly Caine, PhD, an assistant professor in the school of computing at Clemson University in Clemson, S.C. “The introduction of IT into a system is widely understood to fundamentally change the nature of individual privacy because it enables collection and storage of data on a scale not possible using non-electronic methods.”

To determine how patients felt about sharing their health information electronically, the researchers recruited 30 patients with a mean age of 45 years to list item by item which EHR contents they were willing to share and with whom. The results revealed variation within the group and that all patients had a preference for granular control. Additionally, patients with sensitive health information, as a group, had particularly strong feelings about keeping it private.

While more than 75 percent of patients were willing to share all of their health information with a primary care provider, they were less likely to want it available to other healthcare providers, such as specialists and pharmacists. Patients with sensitive records were less likely to want their information available to other providers. For instance, 24 percent of those with sensitive records would share all information with a specialist compared to 56 percent of those without sensitive records. Neither subgroup indicated comfort sharing all of their health information with non-providers, such as government agencies or health plans.

The findings were not surprising and indicate patients want to keep current rights over their health information, according to Caine et al.

In a paper-based system, patients can choose to go outside of their primary care providers’ practice to receive services they’d like to keep private from their primary care provider. “Thus, the overall finding that patients want to maintain the level of privacy and control over the destiny of their health information is not surprising as it simply reflects their current rights and abilities.”