Date of Award
Doctor of Philosophy (PhD)
College of Engineering and Computing
Maxine S. Cohen
Steven R. Terrell
This study examined privacy legislation in California to identify those electronic Protected Health Information (e-PHI) privacy policies that are suited to seniors using in-home health monitoring systems. Personal freedom and independence are essential to a person's physical and mental health, and mobile technology applications provide a convenient and economical method for monitoring personal health. Many of these apps are written by third parties, however, which poses serious risks to patient privacy. Current federal regulations only cover applications and systems developed for use by covered entities and their business partners. As a result, the responsibility for protecting the privacy of the individual using health monitoring apps obtained from the open market falls squarely on the states.
The goal of this study was to conduct an exploratory study of existing legislation to learn what was being done at the legislative level to protect the security and privacy of users using in-home mobile health monitoring systems. Specifically, those developed and maintained by organizations or individuals not classified as covered entities under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The researcher chose California due to its reputation for groundbreaking privacy laws and high population of seniors.
The researcher conducted a content analysis of California state legislation, federal and industry best practices, and extant literature to identify current and proposed legislation regarding the protection of e-PHI data of those using in-home health monitoring systems.
The results revealed that in-home health monitoring systems show promise, but they are not without risk. The use of smartphones, home networks, and downloadable apps puts patient privacy at risk, and combining systems that were not initially intended to function together carries additional concerns. Factors such as different privacy-protection profiles, opt-in/opt-out defaults, and privacy policies that are difficult to read or are not adhered to by the application also put user data at risk.
While this examination showed that there is legislative support governing the development of the technology of individual components of the in-home health monitoring systems, it appears that the in-home health monitoring system as a whole is an immature technology and not in wide enough use to warrant legislative attention. In addition – unlike the challenges posed by the development and maintenance of the technology of in-home health monitoring systems – there is ample legislation to protect user privacy in mobile in-home health monitoring systems developed and maintained by those not classified as covered entities under HIPAA. Indeed, the volume of privacy law covering the individual components of the system is sufficient to ensure that the privacy of the system as a whole would not be compromised if deployed as suggested in this study. Furthermore, the legislation evaluated over the course of this study demonstrated consistent balance between technical, theoretical, and legal stakeholders.
This study contributes to the body of knowledge in this area by conducting an in-depth review of current and proposed legislation in the state of California for the past five years. The results will help provide future direction for researchers and developers as they struggle to meet the current and future needs of patients using this technology as it matures. There are practical applications for this study as well. The seven themes identified during this study can serve as a valuable starting point for state legislators to evaluate existing and proposed legislation within the context of medical data to identify the need for legislation to assist in protecting user data against fraud, identity theft, and other damaging consequences that occur because of a data breach.