Tiase Victoria L, Sward Katherine A, Del Fiol Guilherme, Staes Catherine, Weir Charlene, Cummins Mollie R
The Value Institute, New York-Presbyterian Hospital, New York, NY, United States.
College of Nursing, University of Utah, Salt Lake City, UT, United States.
JMIR Pediatr Parent. 2021 Jan 26;4(1):e25413. doi: 10.2196/25413.
Adolescents are using mobile health apps as a form of self-management to collect data on symptoms, medication adherence, and activity. Adding functionality to an electronic health record (EHR) to accommodate disease-specific patient-generated health data (PGHD) may support clinical care. However, little is known on how to incorporate PGHD in a way that informs care for patients. Pediatric asthma, a prevalent health issue in the United States with 6 million children diagnosed, serves as an exemplar condition to examine information needs related to PGHD.
In this study we aimed to identify and prioritize asthma care tasks and decisions based on pediatric asthma guidelines and identify types of PGHD that might support the activities associated with the decisions. The purpose of this work is to provide guidance to mobile health app developers and EHR integration.
We searched the literature for exemplar asthma mobile apps and examined the types of PGHD collected. We identified the information needs associated with each decision in accordance with consensus-based guidelines, assessed the suitability of PGHD to meet those needs, and validated our findings with expert asthma providers.
We mapped guideline-derived information needs to potential PGHD types and found PGHD that may be useful in meeting information needs. Information needs included types of symptoms, symptom triggers, medication adherence, and inhaler technique. Examples of suitable types of PGHD were Asthma Control Test calculations, exposures, and inhaler use. Providers suggested uncontrolled asthma as a place to focus PGHD efforts, indicating that they preferred to review PGHD at the time of the visit.
We identified a manageable list of information requirements derived from clinical guidelines that can be used to guide the design and integration of PGHD into EHRs to support pediatric asthma management and advance mobile health app development. Mobile health app developers should examine PGHD information needs to inform EHR integration efforts.
青少年正在使用移动健康应用程序作为自我管理的一种形式，以收集有关症状、药物依从性和活动的数据。在电子健康记录（EHR）中添加功能以容纳特定疾病的患者生成的健康数据（PGHD）可能会支持临床护理。然而，对于如何以有助于患者护理的方式纳入PGHD，我们知之甚少。小儿哮喘是美国一个普遍的健康问题，有600万儿童被诊断出患有此病，是研究与PGHD相关的信息需求的一个典型病症。
在本研究中，我们旨在根据小儿哮喘指南确定哮喘护理任务和决策的优先级，并确定可能支持与这些决策相关活动的PGHD类型。这项工作的目的是为移动健康应用程序开发者和EHR集成提供指导。
我们在文献中搜索典型的哮喘移动应用程序，并检查所收集的PGHD类型。我们根据基于共识的指南确定与每个决策相关的信息需求，评估PGHD满足这些需求的适用性，并与哮喘专家提供者验证我们的发现。
我们将指南衍生的信息需求映射到潜在的PGHD类型，并发现了可能有助于满足信息需求的PGHD。信息需求包括症状类型、症状触发因素、药物依从性和吸入器技术。合适的PGHD类型示例包括哮喘控制测试计算、暴露情况和吸入器使用情况。提供者建议将未控制的哮喘作为集中PGHD工作的重点，表明他们更喜欢在就诊时查看PGHD。
我们确定了一份可管理的信息需求清单，这些需求源自临床指南，可用于指导将PGHD设计和集成到EHR中，以支持小儿哮喘管理并推动移动健康应用程序的开发。移动健康应用程序开发者应检查PGHD信息需求，以为EHR集成工作提供参考。
