Benefits and costs of patient generated data, from the clinician’s and patient’s perspective

In the relation between patient and clinician, communication is a central aspect. In this short paper, we conceptualize patient-generated data (PGD) as a means of communication. We present a case study in which we explore the experiences of clinicians and patients with PGD. We identify and discuss some real-world trade-offs in using PGD both effectively and meaningfully in clinical practice. Our key finding is that data collection and sharing is about a lot more than the data itself, and that a process of collective meaning making is required to focus on clinically relevant information, and to ground the communication in a sufficiently shared understanding of the subjective experiences associated with objective data points