Patients Waiting for Cues: Information Asymmetries and Challenges in Sharing Patient-Generated Data in the Clinic

AbstractPatient-generated data (PGD) show great promise for informing the delivery of personalized and patient-centered care. However, patients' data tracking does not automatically lead to data sharing and discussion with clinicians, which can make it difficult to utilize and derive optimal benefit from PGD. In this paper, we investigate whether and how patients share their PGD with clinicians and the types of challenges that arise within this context. We describe patients' immediate experiences of PGD sharing with clinicians, based on our short onsite interviews with 57 patients who had just met with a clinician at a university health center. Our analyses identified overarching patterns in patients' PGD sharing practices and the associated challenges that arise from the information asymmetry between patients and clinicians and from patients' reliance on their memory to share their PGD. We discuss the implications of our findings for designing PGD-integrated health IT systems in ways to support patients' tracking of relevant PGD, clinicians' effective engagement with patients around PGD, and the efficient sharing and review of PGD within clinical settings.