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

1篇摘要 2 3在一个由提供者和服务者组成的复杂网络中协调护理， 4对有特殊医疗需求的儿童和青少年的家庭造成压力和孤立 5（CYSHCN）;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，管理和分享他们孩子的健康 7跨多个信息和电子健康记录（EHR）系统的数据是有前途的 8解决方案数字PHR能够实现其承诺的核心是快速医疗保健 9互操作性资源（FHIR）-更新的数据标准，促进安全的数据访问 以及在第三方移动的应用（app）和EHR之间共享。尽管它们很重要， 11 FHIR技术尚未被广泛采用。支持FHIR的数字PHR移动的应用程序 12（Caremap）与家庭和临床医生共同设计，以协调CYSHCN的护理， 13在初步测试中得到了家庭的积极评价。执行和评价 14现实环境中的Caremap移动的应用程序现在是关键的下一步。 我们将对40个家庭（成人）进行单组、非随机、可行性研究 16名父母/护理人员）在儿科初级保健诊所使用数字PHR移动的 17申请作为一个工具，协调他们的孩子照顾超过6个月的时间。初步研究 18总体可行性结果将包括技术可行性措施（支持FHIR 19移动的应用程序与EHR的集成）和现实世界临床中的实施结果 20环境使用收敛混合方法设计，我们将合并定量可行性 21个数据和两个定性数据来源（与家庭和供应商的半结构化访谈; 22个家庭利益攸关方参与小组），以确定实施障碍和促进因素。 23使用基线和6个月家庭报告调查措施的前后分析，我们将 24探索家庭应用程序采用水平与家庭报告结果之间的关联。 25.这项建议具有高度创新性，因为它将是第一个支持FHIR的数字PHR 实施了26个移动的应用程序，通过安全访问加强对CYSHCN的护理协调， 27分享电子健康记录数据和家庭报告的健康见解。调查结果将具有高度意义 28，因为他们将支持未来的多地点务实，集群随机试验，以评估 29与常规相比，使用数字PHR移动的应用程序增强护理协调的有效性 30协调由于CYSHCN和患有多种疾病的成年人之间的需求相似， 31种慢性疾病，该研究的结果将为以家庭为中心的护理提供信息 32协调，这将是非常有影响力的复杂人群在整个年龄范围。

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.