Hourcade Juan Pablo, O'Rorke Michael, Chrischilles Elizabeth, Rudzianski Nicholas J, Gryzlak Brian, Peterman Kerry, Ortman Chris, Wolstencroft Sam, Bean Margaret, Gellerman Elyse, Mailman Josh A, Wahmann Maryann
Department of Computer Science, University of Iowa, 14 MacLean Hall, Iowa City, IA, 52242, United States, 1 3193532543.
College of Public Health, University of Iowa, Iowa City, IA, United States.
JMIR Hum Factors. 2025 Jun 3;12:e68788. doi: 10.2196/68788.
Personal health record (PHR) software has the potential of aiding with patient engagement and data collection in longitudinal research to better understand the long-term impact of treatments on patients with rare medical conditions. Neuroendocrine tumors (NETs) represent a rare condition with unique challenges related to symptom management, treatment tracking, and patient-provider communication.
This study aimed to design, develop, and evaluate PHR software tailored for patients with NETs as part of a longitudinal research study. Our goal was to create a patient-centered PHR that supports both self-management and research data collection.
This included activities spanning the entire development lifecycle from identifying user requirements through focus groups and surveys, iterative prototype refinement via cognitive walkthroughs, and usability testing of the functional PHR system. Feedback from patient advocacy organizations and clinical experts further informed PHR development.
The resulting PHR allows patients with NETs to access condition-specific information, track symptoms, monitor treatment regimens, and share data with health care providers. Patients valued the ability to visualize personal health trends and patterns over time, enhancing both self-management and communication with medical teams. Usability testing indicated high levels of patient satisfaction with the system's functionality and design.
The development of this PHR demonstrates the value of engaging patients in the design process to ensure that health technologies address real-world needs. Our approach provides a model for designing PHR systems for other rare conditions, highlighting the importance of patient-centered design in supporting both clinical care and longitudinal research.
个人健康记录（PHR）软件有潜力在纵向研究中帮助患者参与并进行数据收集，以便更好地了解治疗对罕见疾病患者的长期影响。神经内分泌肿瘤（NETs）是一种罕见疾病，在症状管理、治疗跟踪以及患者与医疗服务提供者沟通方面面临独特挑战。
本研究旨在设计、开发并评估一款专为NETs患者量身定制的PHR软件，作为纵向研究的一部分。我们的目标是创建一个以患者为中心的PHR，支持自我管理和研究数据收集。
这包括从通过焦点小组和调查确定用户需求，到通过认知走查进行迭代原型优化，以及对功能性PHR系统进行可用性测试等贯穿整个开发生命周期的活动。患者权益组织和临床专家的反馈进一步为PHR的开发提供了信息。
最终的PHR使NETs患者能够获取特定疾病信息、跟踪症状、监测治疗方案，并与医疗服务提供者共享数据。患者重视能够随时间可视化个人健康趋势和模式的功能，这增强了自我管理以及与医疗团队的沟通。可用性测试表明患者对系统功能和设计的满意度很高。
这款PHR的开发证明了让患者参与设计过程以确保健康技术满足现实需求的价值。我们的方法为设计针对其他罕见疾病的PHR系统提供了一个模型，突出了以患者为中心的设计在支持临床护理和纵向研究方面的重要性。
