In a recent trial for a research study, nearly half of patients with access to and control over their electronic medical record (EMR) chose to withhold clinically sensitive information.
Researchers, led by a team from Clemson University, examined the impact of patient-controlled access to the EMR. The Clemson team interviewed patients on their privacy and sharing preferences. From those interviews, they designed an interface that allowed patients to control how and to whom their medical data was shared. They then conducted a six-month trial with 105 patients using this interface.
In this trial, 49 percent of patients withheld sensitive information from some or all of their healthcare providers. This critical information could include whether or not they have a sexually transmitted disease or substance abuse problems. Moreover, the researchers say that patients strongly desired having this kind of control over their data. Providers were supportive, although about a quarter said they felt very uncomfortable about not being able to see all of the information in their patients' records. Those against it say that it could jeopardize care. The interface allowed providers to view hidden data if they felt the care plan required them to do so.
"It is critically important to consider patients' privacy preferences about their health information," stated Kelly Caine, assistant professor in Clemson's School of Computing. “If we fail to design systems that meet patients' needs and desires about the extent to which their health data are shared, patients will reject them or even refuse to seek care."
The findings were published in Journal of General Internal Medicine.