Division of Emergency Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Department of Biomedical Informatics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
J Am Med Inform Assoc. 2019 Aug 1;26(8-9):714-721. doi: 10.1093/jamia/ocz067.
The study sought to develop the necessary elements for a personalized health record (PHR) for youth emancipating from child protective custody (eg, foster care) by collecting thoughts and ideas from current and former foster youth and community stakeholders who have a significant amount of experience working with emancipating young people.
We employed a mixed methods, participatory research design using concept mapping to identify key features for PHR across stakeholders.
In the clusters, common themes for necessary elements for a PHR included health education, health tips, medication instructions, diagnoses including severity, and website resources that could be trusted to provide reliable information, and addressed data privacy issues such as the primary user being able to choose what diagnoses to share with their trusted adult and the ability to assign a trusted adult to view a part of the record.
By directly involving youth in the design of the PHR, we are able to ensure we included the necessary health and life skills elements that they require. As a PHR is created for foster youth, it is important to consider the multiple uses that the data may have for emancipated youth.
A PHR for foster youth needs to include an appropriate combination of information and education for a vulnerable population. In addition to providing some of their basic health and custody information, a PHR provides an opportunity to give them information that can be trusted to explain common diagnoses, medications, and family health history risks.
本研究旨在通过收集有丰富青少年寄养经验的现职和前寄养青年以及社区利益相关者的意见和想法，为即将脱离儿童保护监护（例如寄养）的青少年制定个性化健康记录（PHR）所需的要素。
我们采用混合方法、参与式研究设计，使用概念映射来确定利益相关者对 PHR 的关键特征。
在聚类中，PHR 所需要素的共同主题包括健康教育、健康提示、用药说明、包括严重程度的诊断以及可以信赖以提供可靠信息的网站资源，并解决了数据隐私问题，例如主要用户能够选择与他们信任的成年人共享哪些诊断，以及能够指定信任的成年人查看记录的一部分。
通过直接让青年参与 PHR 的设计，我们能够确保包括他们所需的健康和生活技能要素。由于 PHR 是为寄养青年创建的，因此必须考虑数据可能对已成年的青年有多种用途。
寄养青年的 PHR 需要包括针对弱势人群的适当信息和教育组合。除了提供一些基本的健康和监护信息外，PHR 还提供了一个机会，可以向他们提供可以信赖的信息，以解释常见诊断、药物和家族健康史风险。
