CCE Theses and Dissertations

Date of Award

2019

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

College of Computing and Engineering

Advisor

Maxine S. Cohen

Committee Member

Martha M. Snyder

Committee Member

Laurie Dringus

Abstract

Medical literature identifies a number of technology-driven improvements in disease management such as implantable medical devices (IMDs) that are a standard treatment for candidates with specific diseases. Among patients using implantable cardiac defibrillators (ICD), for example, problems and issues are being discovered faster compared to patients without monitoring, improving safety. What is not known is why patients report not feeling safer, creating a safety paradox, and why patients identify privacy concerns in ICD monitoring.

There is a major gap in the literature regarding the factors that contribute to perceived safety and privacy in remote patient monitoring (RPM). To address this gap, the research goal of this study was to provide an interpretive account of the experience of RPM patients. This study investigated two research questions: 1) How did RPM recipients perceive safety concerns?, and 2) How did RPM recipients perceive privacy concerns? To address the research questions, in-depth, semi-structured interviews were conducted with six participants to explore individual perceptions in rich detail using interpretative phenomenological analysis (IPA). Four themes were identified and described based on the analysis of the interviews that include — comfort with perceived risk, control over information, education, and security — emerged from the iterative review and data analysis.

Participants expressed comfort with perceived risk, however being scared and anxious were recurrent subordinate themes. The majority of participants expressed negative feelings as a result of an initial traumatic event related to their devices and lived in fear of being shocked in inopportune moments. Most of these concerns stem from lack of information and inadequate education. Uncertainties concerning treatment tends to be common, due to lack of feedback from ICD RPM status. Those who knew others with ICD RPM became worrisome after hearing about incidences of sudden cardiac death (SCD) when the device either failed or did not work adequately to save their friend’s life.

Participants also expressed cybersecurity concerns that their ICD might be hacked, maladjusted, manipulated with magnets, or turned off. They believed ICD RPM security was in place but inadequate as well as reported feeling a lack of control over information. Participants expressed wanting the right to be left alone and in most cases wanted to limit others’ access to their information, which in turn, created conflict within families and loved ones. Geolocation was a contentious node in this study, with most of participants reporting they did not want to be tracked under any circumstances.

This research was needed because few researchers have explored how people live and interact with these newer and more advanced devices. These findings have implications for practice relating to RPM safety and privacy such as identifying a gap between device companies, practitioners, and participants and provided directions for future research to discover better ways to live with ICD RPM and ICD shock.

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