Khurshid Anjum, Oliveira Eliel, Nordquist Eric, Lakshminarayanan Vidya, Abrol Vishal
Department of Population Health, Dell Medical School, The University of Texas at Austin, Texas, USA.
School of Information, The University of Texas at Austin, Texas, USA.
JAMIA Open. 2021 Dec 28;4(4):ooab109. doi: 10.1093/jamiaopen/ooab109. eCollection 2021 Oct.
Our aim is to develop a patient engagement technology that makes it easy for patients to access their own medical information and share it with others.
This paper describes our design through an adapted Community Engagement Studio methodology to identify the needs and preferences of a diverse group of Latinx, African-American, and Asian-American individuals in the community. We use Human-Centered Design to interpret these needs and preferences to build a digital app platform, using national data standards, clinical data aggregators, and privacy-preserving solutions while maintaining the security and confidentiality of patients.
We designed and developed , an app platform, that allows patients to access their data and to share that access as HL7 FHIR application programming interfaces with third-party app developers. We accomplished 2 major tasks: first, to demonstrate the use of interoperability and authentication standards, such as HL7 FHIR and OAuth2, to help develop patient engagement technologies, and second, to co-develop and co-design FHIRedApp with active involvement of African-American, Latinx, and Asian-American community members. Usability results show high satisfaction rates for FHIRedApp.
The development of FHIRedApp demonstrates how technology innovations using national interoperability standards can be informed through a methodology of community engagement and human-centered design that involves local racial and ethnic groups.
我们的目标是开发一种患者参与技术，使患者能够轻松访问自己的医疗信息并与他人共享。
本文通过一种经过改编的社区参与工作室方法来描述我们的设计，以确定社区中不同的拉丁裔、非裔美国人和亚裔美国人群体的需求和偏好。我们采用以人为本的设计来解读这些需求和偏好，以构建一个数字应用程序平台，使用国家数据标准、临床数据聚合器和隐私保护解决方案，同时维护患者的安全和隐私。
我们设计并开发了一个应用程序平台，该平台允许患者访问他们的数据，并作为HL7 FHIR应用程序编程接口与第三方应用程序开发者共享该访问权限。我们完成了两项主要任务：第一，展示使用HL7 FHIR和OAuth2等互操作性和认证标准来帮助开发患者参与技术；第二，在非裔美国人、拉丁裔和亚裔美国人社区成员的积极参与下共同开发和共同设计FHIRedApp。可用性结果显示对FHIRedApp的满意度很高。
FHIRedApp的开发展示了如何通过一种涉及当地种族和族裔群体的社区参与和以人为本的设计方法，利用国家互操作性标准推动技术创新。
