View article

Although the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy—an important construct that captures an individual’s ability to manage their health and to engage with their health care providers—has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients’ data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices.

This study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients.

We surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients’ retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants’ health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients’ immediate experiences situated within their clinic visit.

We found no evidence that tracking PGD was …