Implications of Trust on Patient Generated Health Data

Abstract

Propelled by a focus on patient-centered care, technology development is moving in a direction of providing the patient formal avenues of contributing health information. Specifically, patient generated health data (PGHD), ranging from biometric to health status interpretation is an emerging topic in health informatics (Hull, 2015). Further, tools are in development to allow for the electronic delivery of PGHD from the patient to the provider in the electronic health record (EHR).

At its core, human factors is concerned with representing information in a way that supports safe and efficient decision making. PGHD is a topic area that requires a human factors perspective for multiple reasons including the need to identify user needs and requirements of data capture on the patient side, data use on the provider side, and supporting technology design to support these users effectively. Much research in health informatics and healthcare human factors is concerned with the EHR, as the system has not reached intended design, forcing clinicians to search through a broad and deep information space to make decisions (Sittig, Wright, Ash, & Singh, 2016). As an emerging concept in health informatics, PGHD will serve as an additional informational category within the EHR for providers to consider in medical decision making. Therefore, one construct that needs to be examined is trust.

The topic of trust has considerable relevance as reflected by prolific research efforts in domains in which automated technology and artificial intelligence dominate. Understanding and consideration of trust factors has been integral in complex domains where technological systems carry out functions ranging from representing and delivering information, providing decision support, to carrying out complex tasks.

Trust is defined by Mayer, David, & Schoorman as a “willingness to be vulnerable to the actions of another party based on the expectation that the other will perform a particular action important to the trustor, irrespective of the ability to monitor or control that other party” (Mayer, David & Schoorman, 1995, pg 5). In healthcare, examination of trust factors has been limited to trust in technology, from both provider and patient perspectives, and trust in the provider from the patient perspective (interpersonal trust) (Montague, 2010; Montague, Winchester, & Kleiner, 2010). Albeit limited, evidence does suggest that trust plays a role in healthcare outcomes. For instance, higher trust in one’s primary care physician can increase proactive health behaviors such as following up with recommended colorectal cancer screenings (Gupta, Brenner, Ratanawangsa, & Inadomi, 2014).

However, as of yet, no literature exists examining trust factors associated with the patient from the provider’s perspective either in face-to-face interactions or technology mediated. Therefore, there is a need to examine and consider trust to inform the design and implementation of electronic PGHD systems addressing the needs of both providers and patients in the capture and delivery of relevant content that may be useful and usable to the provider. Leveraging the knowledge from the trust in automation literature (Parasuraman, Sheridan, & Wickens, 2000), we can begin to examine issues of reliance and trust of PGHD.