Omoloja Abiodun, Vundavalli Shravani
Division of Nephrology, Dayton Children's Hospital, Dayton OH, United States; Department of Clinical Informatics, Dayton Children's Hospital, Dayton OH, United States; Department of Pediatrics, Wright State University Boonshoft School of Medicine, Dayton OH, United States.
Division of Clinical Informatics, Nationwide Children's Hospital, Columbus, OH, United States; Section of Primary Care Pediatrics, Nationwide Children's Hospital, Columbus, OH, United States; Department of Pediatrics, The Ohio State University College of Medicine, Columbus, OH, United States; Department of Family Medicine, The Ohio State University College of Medicine, Columbus, OH, United States.
Curr Probl Pediatr Adolesc Health Care. 2021 Nov;51(11):101103. doi: 10.1016/j.cppeds.2021.101103. Epub 2021 Nov 16.
Patient Generated Health Data (PGHD) is defined as data generated by and from patients. The use of PGHD has rapidly increased with the widespread availability of smart phone mobile health applications (mHealth apps) and wearable devices. Currently, the vast majority of PGHD is generated via the use of mHealth apps and wearables like "Fitbit" or medical devices such as a continuous glucose monitoring device. There are many benefits of PGHD including increased monitoring of children's chronic health conditions outside clinical care to supplement ambulatory clinic visits, improved health outcomes, increased patient awareness and engagement and improved patient-provider communication. When leveraged properly, PGHD can be a powerful tool in delivering safe, effective, patient centered, efficient and equitable care as outlined by the Institute of Medicine (IOM). The challenges that limit collection, use and acceptance of PGHD include limited access to the internet, inability to incorporate PGHD into clinical workflows, data privacy and security concerns and apprehension about accuracy and safety of mHealth apps. These issues can lead to a lack of use or compliance with devices or apps associated with PGHD. To ensure optimal health benefits, agreement to leverage PGHD should be a joint decision between the clinician and the patient/caregiver. Future steps to ensure safety and clinical relevance of PGHD include involving regulatory authorities, device manufacturers and professional bodies to develop standards for mHealth apps and wearables to promote uncomplicated PGHD integration into workflows, easy and secure sharing of PGHD. Wearable technology, medical devices and smart phone apps become more advanced and widespread among the population, there will be an increasing potential for PGHD to facilitate personalized, efficient, and collaborative care resulting in improved health outcomes for children and adolescent and young adult. More research and innovation is needed to facilitate this transition.
患者生成的健康数据(PGHD)被定义为由患者生成并源自患者的数据。随着智能手机移动健康应用程序(移动健康应用)和可穿戴设备的广泛普及,PGHD的使用迅速增加。目前,绝大多数PGHD是通过使用移动健康应用和如“Fitbit”之类的可穿戴设备或诸如连续血糖监测设备等医疗设备生成的。PGHD有许多益处,包括在临床护理之外增加对儿童慢性健康状况的监测以补充门诊就诊、改善健康结果、提高患者意识和参与度以及改善患者与医疗服务提供者之间的沟通。如医学研究所(IOM)所述,若能得到妥善利用,PGHD可以成为提供安全、有效、以患者为中心、高效且公平的医疗服务的有力工具。限制PGHD收集、使用和接受的挑战包括互联网接入受限、无法将PGHD纳入临床工作流程、数据隐私和安全问题以及对移动健康应用准确性和安全性的担忧。这些问题可能导致对与PGHD相关的设备或应用缺乏使用或依从性。为确保获得最佳健康益处,利用PGHD的协议应由临床医生与患者/护理人员共同决定。确保PGHD安全性和临床相关性的未来步骤包括让监管机构、设备制造商和专业团体参与,制定移动健康应用和可穿戴设备的标准,以促进将PGHD简单地整合到工作流程中,方便且安全地共享PGHD。随着可穿戴技术、医疗设备和智能手机应用在人群中变得更加先进和普及,PGHD促进个性化、高效和协作式医疗服务从而改善儿童、青少年和青年成人健康结果的潜力将越来越大。需要更多的研究和创新来推动这一转变。