Feasibility Study of a Mobile Digital Personal Health Record for Family-Centered Care Coordination for Children and Youth with Special Healthcare Needs

1摘要 2. 3通过提供者和服务本身的复杂网络协调护理 4对于有特殊医疗需求的儿童和青年的家庭来说，压力和孤立 5(儿童保健中心)；因此，迫切需要更好的护理协调解决方案。数字个人健康 6个记录(PHR)，允许家庭安全地访问、管理和共享孩子的健康 跨多个信息和电子健康记录(EHR)系统的7个数据前景看好 8个解决方案。能够实现承诺的数字PHR的核心是Fast Healthcare 9互操作性资源(FHIR)-促进安全数据访问的最新数据标准 10以及在第三方移动应用程序(APP)和EHR之间共享。尽管它们很重要， 11冷杉技术尚未得到广泛采用。支持FHIR的数字PHR移动应用程序 12(Caremap)是与家庭和临床医生共同设计的，以协调对CYSHCN和 13在初步测试中得到了家庭的积极评价。实施和评估 14现实世界中的Caremap移动应用程序现在是向前迈出的关键一步。 15我们将对40个家庭(成人)进行单组、非随机的可行性研究 16名儿童初级保健中心的父母/照顾者)使用数字PHR移动设备 17申请作为一种工具，在6个月内协调其子女的照料。初步研究 18总体可行性的结果将包括技术可行性的衡量标准(FHIR启用 19移动应用程序与EHR的集成)和在现实世界临床中的实施结果 20个环境。使用收敛的混合方法设计，我们将合并量化的可行性 21个数据和两个定性数据来源(对家庭和提供者的半结构化访谈； 22个家庭利益攸关方参与小组)，以确定执行障碍和促进者。 23利用基线和6个月家庭报告调查措施的前后分析，我们将 24探索家庭应用程序的采用水平与家庭报告结果之间的关联。 这项提议具有很高的创新性，因为它将是第一个启用FHIR的数字PHR 实施了26个移动应用程序，通过安全访问和 27分享电子健康记录数据和家庭报告的健康见解。这些发现将具有非常重要的意义 28因为他们将支持未来的多站点务实的整群随机试验，以评估 29与平时相比，数字PHR移动应用增强了护理协调的有效性 30护理协调。由于青少年儿童与患有多发性硬化症的成年人的需求相似 31种慢性病，这项研究的发现将为以家庭为中心的护理的改善提供信息 32协调，这将对各个年龄段的复杂人口产生高度影响。

1 ABSTRACT 2 3 Coordinating care across a complex web of providers and services on their own is 4 stressful and isolating for families of children and youth with special healthcare needs 5 (CYSHCN); thus, better care coordination solutions are critically needed. Digital personal health 6 records (PHR) that allow families to securely access, manage, and share their child’s health 7 data across multiple information and electronic health record (EHR) systems are promising 8 solutions. Central to digital PHRs being able to fulfill their promise are Fast Healthcare 9 Interoperability Resources (FHIR) – updated data standards that facilitate secure data access 10 and sharing between third party mobile applications (apps) and EHRs. Despite their importance, 11 FHIR technologies have yet to be widely adopted. A FHIR-enabled digital PHR mobile app 12 (Caremap) was co-designed with families and clinicians to coordinate care for CYSHCN and 13 has been positively reviewed by families in preliminary testing. Implementation and evaluation of 14 the Caremap mobile app in real-world setting is now the critical next step forward. 15 We will conduct a single group, non-randomized, feasibility study with 40 families (adult 16 parents/caregivers) of CYSHCN in pediatric primary care clinics to use the digital PHR mobile 17 application as a tool for coordinating their child’s care over a 6-month period. The primary study 18 outcome of overall feasibility will include measures of technical feasibility (FHIR-enabled 19 integration of the mobile app with the EHR) and implementation outcomes in real-world clinical 20 environments. Using a convergent mixed methods design, we will merge quantitative feasibility 21 data and two qualitative data sources (semi-structured interviews with families and providers; 22 family stakeholder engagement panels) to identify implementation barriers and facilitators. 23 Using pre/post analyses of baseline and 6-month family-reported survey measures, we will 24 explore associations between level of family app adoption and family-reported outcomes. 25 This proposal is highly innovative because it will be the first FHIR-enabled digital PHR 26 mobile app implemented to enhance care coordination for CYSHCN via secure access and 27 sharing of EHR data and family-reported health insights. The findings will be highly significant 28 because they will support a future multi-site pragmatic, cluster randomized trial to evaluate the 29 effectiveness of enhanced care coordination with a digital PHR mobile app compared to usual 30 care coordination. Due to similarities in needs between CYSHCN and adults with multiple 31 chronic conditions, the study’s findings will inform improvements in family-centered care 32 coordination that will be highly impactful for complex populations across the age spectrum.