JMIR Publications

ABSTRACT

Background:

Adverse drug events are unintended and harmful events related to medication use. Leveraging information and communication technologies to increase information sharing about adverse drug events may improve patient care, but can also introduce concerns about data privacy.

Objective:

The aim of our study was to examine patients’ and their caregivers’ views about data protection when using information and communication technologies to communicate adverse drug event information in order to improve patient safety.

Methods:

We conducted an exploratory qualitative study. We held four focus groups among patients who had experienced or were at risk of experiencing an adverse drug event, family members, and caregivers recruited through multiple avenues. We iteratively analyzed the data using situational analysis.

Results:

Of the 47 participants we recruited, 28 attended our focus groups. We identified three primary themes. First, participants felt that improved information sharing about adverse drug events within their circle of care would likely improve care. Second, participants were concerned about data handling and inappropriate access, but believed that the benefits of information sharing outweighed the risks of privacy breaches. Lastly, participants were more concerned about data privacy in the context of stigmatized health conditions.

Conclusions:

Current conditions for maintaining health data privacy are consistent with participants’ preferences, despite the fact that health data are susceptible to breaches and mismanagement. Information sharing that increases patient safety may justify potential privacy risks. Greater attention to patient concerns and the effect of social and contextual concerns in the design and implementation of health information technologies may increase patient confidence in the privacy of their information.