Developing Infrastructure to Realize the Value of Patient-Generated Health Data in a Large Integrated Health Care System: The Veterans Health Administration Experience

Patient-generated health data (PGHD) encompass health-related information created, recorded, and gathered by patients in their daily lives, and are distinct from data collected in clinical settings. PGHD can offer insight into patients' everyday health behaviors and conditions, supporting health management and clinical decision-making. The Veterans Health Administration (VHA) has developed a robust infrastructure to collect PGHD, including automatically collected data from digital sensors and patient-entered data. This effort is guided by comprehensive policy and strategy documents to ensure the secure storage and effective use of PGHD. This paper describes the development and implementation of an infrastructure to support PGHD within the VHA and highlights envisioned clinical and research uses of PGHD to advance health care for US veterans. The PGHD database was built to Fast Healthcare Interoperability Resources standards, facilitating secure data storage and exchange of PGHD. Clinical tools, such as the provider-facing dashboards, make PGHD accessible from the electronic health records. Research and evaluation efforts focus on evaluating PGHD's impact on patient engagement, clinical outcomes, and health care equity. The VHA's comprehensive PGHD infrastructure represents a significant advancement in personalized health care and patient engagement. The integration of PGHD into clinical practice can enhance shared decision-making and self-management, while research and evaluation efforts can address how to maximize the benefits of PGHD for veterans. The VHA's approach sets a benchmark for other US health care systems in leveraging PGHD to achieve the broad aims of enhancing stakeholder health care experiences, improving population health and health equity, and reducing costs.