Marchak Jordan Gilleland, Cherven Brooke, Williamson Lewis Rebecca, Edwards Paula, Meacham Lillian R, Palgon Michael, Escoffery Cam, Mertens Ann C
Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA, USA.
Department of Pediatrics, Emory University, Atlanta, GA, USA.
Support Care Cancer. 2020 Aug;28(8):3905-3914. doi: 10.1007/s00520-019-05199-w. Epub 2019 Dec 18.
The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer.
Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLink (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12).
Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors ("Learn"), (2) secure electronic storage for healthcare documents to direct long-term follow-up care ("Store"), and (3) communication functionality to allow sharing of health documents with healthcare providers ("Share"). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory.
User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.
本文的目的是展示如何运用以用户为中心的设计理论和方法来开发并迭代改进技术，以支持儿童癌症幸存者。
对儿科癌症的年轻成年幸存者（N = 3）、家长（N = 11）和医疗服务提供者（N = 14）进行了焦点小组讨论和结构化访谈，以了解他们作为潜在用户的需求以及他们使用癌症幸存者个人电子健康记录（Cancer SurvivorLink，https://cancersurvivorlink.org/）的背景。采用出声思维法对幸存者/家长（N = 4）进行可用性评估，以评估个人健康记录的功能，并对医疗服务提供者进行焦点小组讨论（N = 12）。
通过需求评估确定的主要主题指导了个人健康记录的设计，包括（1）关于儿科癌症幸存者终身医疗需求的教育（“学习”），（2）用于指导长期后续护理的医疗文件的安全电子存储（“存储”），以及（3）允许与医疗服务提供者共享健康文件的通信功能（“共享”）。可用性评估确定了个人健康记录设计中的挑战，这些挑战为改进网站以提高个人健康记录的实用性和易用性提供了依据，包括注册向导和医疗服务提供者目录。
以用户为中心的设计方法为对无束缚、患者控制的个人健康记录进行迭代改进提供了依据，以解决可用性障碍并满足儿童癌症幸存者及其医疗服务提供者自我确定的需求。
