Division of Informatics, Imaging and Data Science, School of Health Sciences, Manchester Academic Health Science Centre, University of Manchester, Manchester, UK.
Centre for Patient Reported Outcomes Research (CPROR), Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK; National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK; National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) West Midlands, University of Birmingham, Birmingham, UK; University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
Semin Nephrol. 2024 May-Jul;44(3-4):151552. doi: 10.1016/j.semnephrol.2024.151552. Epub 2024 Aug 19.
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.
全球范围内的肾脏科服务正越来越多地使用数字健康技术来提供医疗服务。这包括肾脏电子患者报告结局（ePRO）系统：移动数字技术，能够远程实时地从肾脏病患者那里以电子方式获取 PRO 数据，并与他们的肾脏护理团队共享。目前的肾脏 ePRO 系统通常旨在支持肾脏病患者症状的监测和管理。大多数 ePRO 系统迄今为止仅在研究环境中实施，尚未在临床实践中常规使用，因此其在实际实施中的准备情况在很大程度上尚不清楚。与基于纸质的 PRO 收集相比，ePRO 系统具有某些优势，我们将其归类为效率效益（例如，行政负担降低）、直接患者护理效益（例如，基于 PRO 的自动化患者教育）以及卫生系统和研究效益（例如，为多种目的收集一次 ePRO 数据）。与此同时，肾脏 ePRO 系统也存在一些缺点，例如它们可能会加剧现有护理和结果方面的不平等，并对员工负担和患者的肾脏护理体验产生负面影响。在地方、组织和国家层面上加快肾脏 ePRO 系统的开发和采用有前景的领域包括：利用国家肾脏登记处作为使能基础设施；使用新颖的数据驱动技术（例如，计算机自适应测试系统、可配置仪表板）；应用实施科学和行动研究方法，将 ePRO 研究结果更有效地转化为临床实践；并让利益相关者（包括患者及其照护者、医疗保健专业人员、政策制定者、支付方、ePRO 专家、技术提供商以及监测和改善肾脏服务质量的组织）参与其中。
