Interrelationships Between Patients’ Data Tracking Practices, Data Sharing Practices, and Health Literacy: Onsite Survey Study (Preprint)

Abstract

BACKGROUND Despite the great promise of patient-generated data (PGD) in optimizing patient care, little is known about whether patients who track their PGD necessarily share their data with their doctors. Meanwhile, health literacy—an important construct that captures an individual’s ability to manage their health and to engage with their healthcare providers—has often been neglected in prior studies focused on PGD tracking and sharing. To utilize PGD, we need to bridge the gap between patients’ data tracking and sharing of the data by first understanding the interrelationships between these practices and factors contributing to such practices. OBJECTIVE We aimed to systematically examine the interrelationships among individual patients’ PGD tracking practices, their data sharing practices, and their health literacy. METHODS Different from prior research that often examined patients’ retrospective experience after some time had passed since their clinic visit, we surveyed 109 patients who had just met with a doctor at the University Health Center. The survey asked patients about their PGD tracking and sharing practices based on the specific clinical encounter they just had. The survey also contained questions related to participants’ health literacy. The onsite survey study enabled us to collect ecologically valid data based on patients’ immediate experiences situated within their clinic visit. RESULTS (1) We found no evidence that tracking PGD related to self-reports of “having sufficient information to manage one’s health”; however, the number of data types participants tracked positively related to their self-assessed “ability to actively engage with healthcare providers”; (2) participants’ data tracking practices and their health literacy did not relate to their data sharing practices, but their ability to engage with healthcare providers positively related to their willingness to share their data with doctors in the future; and (3) participants reported several benefits of, and barriers to, sharing their PGD with doctors. CONCLUSIONS While tracking PGD could help patients better engage with healthcare providers, it may not provide them with sufficient information to manage their health. The gaps between tracking and sharing PGD with healthcare providers call for efforts to inform patients of how their data relate to their health and to facilitate more efficient doctor-patient communication. To realize the full potential of PGD and to promote individuals’ health literacy, empowering patients to effectively track and share their PGD is important—both technologies and healthcare providers can play an important role.