Unleashing the Potential for Patient-Generated Health Data (PGHD)

Abstract

Patient-generated health data (PGHD) is data created, captured, or recorded by patients in between healthcare appointments, and is an important supplement to data generated during periodic clinical encounters. PGHD has potential to improve diagnosis and management of chronic conditions, improve health outcomes, and facilitate more "connected health" between patients and their care teams. Electronic PGHD is rapidly accelerating due to the proliferation of consumer health technologies, remote patient monitoring systems, and personal health platforms. Despite this tremendous growth in PGHD and anticipated benefits, broadscale use of PGHD has been challenging to implement with significant gaps in current knowledge about how PGHD can best be employed in the service of high-quality, patient-centered care. While the role of PGHD in patient self-management continues to grow organically, we need a deeper understanding of how data collection and sharing translate into actionable information that supports shared decision-making and informs clinical care in real-world settings. This, in turn, will foster both clinical adoption and patient engagement with PGHD. We propose an agenda for PGHD-related research in the Veterans Health Administration that emphasizes this clinical value to enhance our understanding of its potential and limitations in supporting shared decision-making and informing clinical care.