Electronic Collection of Patient-Reported Outcomes to Improve Kidney Care: Benefits, Drawbacks, and Next Steps

Abstract

Kidney services worldwide are increasingly using digital health technologies to deliver care. This includes kidney electronic patient-reported outcome (ePRO) systems: ambulatory digital technologies that enable the capture of PRO data electronically from people with kidney disease remotely and in real time to be shared with their kidney care team. Current kidney ePRO systems commonly aim to support the monitoring and management of symptoms in patients with kidney disease. The majority have thus far only been implemented in research settings and are not yet routinely used in clinical practice, leaving their readiness for real-world implementation largely unknown. Compared with paper-based PRO collection, ePRO systems have certain advantages, which we categorize as efficiency benefits (e.g., lower administrative burden), direct patient care benefits (e.g., automated PRO-based patient education), and health system and research benefits (e.g., collecting ePRO data once for multiple purposes). At the same time, kidney ePRO systems come with drawbacks, such as their potential to exacerbate existing inequities in care and outcomes and to negatively affect staff burden and patients’ experience of kidney care. Areas that hold promise for expediting the development and uptake of kidney ePRO systems at the local, organizational, and national level include harnessing national kidney registries as enabling infrastructures; using novel data-driven technologies (e.g., computerized adaptive test systems, configurable dashboards); applying implementation science and action research approaches to enhance translation of ePRO research findings into clinical practice; and engaging stakeholders, including patients and carers, health care professionals, policymakers, payers, ePRO experts, technology providers, and organizations that monitor and improve the quality of kidney services.