Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, Portland, USA.
Health Informatics, Connect America, Philadelphia, USA.
Patient Educ Couns. 2022 Jul;105(7):2557-2561. doi: 10.1016/j.pec.2021.11.018. Epub 2021 Nov 25.
Consuming educational content, adhering to treatment plans and managing symptoms and side-effects can be overwhelming to new oncology patients.
The purpose of this study is to engage patients in conceptualization of enhanced clinic processes and digital health tools to support awareness and use of integrative oncology services.
We engaged patients in participatory design to understand lived experiences surrounding use of integrative oncology services during and after conventional cancer treatment.
Ten participatory design sessions were held with individual participants. Sessions began with patient story telling regarding diagnosis and paths to awareness and use of integrative oncology services. We then reviewed prototype mobile app screens to solicit feedback regarding digital health functionality to support patient navigation of symptom-alleviating options.
Oncology patients are active participants in the management of symptoms and side effects. Patients who utilize yoga, acupuncture, and massage report a need for earlier patient education about these services. Patients express interest in digital health tools to match symptoms to options for relief, provide access to searchable information, and facilitate streamlined access to in-person and remote services.
Patients co-produce wellbeing by seeking solutions to daily challenges and consuming educational content. Clinics can collaborate with patients to identify high priority needs and challenges.
Active collaboration with patients is needed to identify unmet needs and guide development of clinic processes and digital health tools to enhance awareness and use of IO services in conventional cancer care.
The principal investigator was supported by the U.S. Agency for Healthcare Research and Quality (AHRQ K12HS026370). The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of AHRQ. The sponsor had no role in the study design, data collection, analysis, report writing, or decision to submit for publication.
对于新的肿瘤患者来说，消化教育内容、坚持治疗计划以及管理症状和副作用可能会让人感到不知所措。
本研究的目的是让患者参与到增强诊所流程和数字健康工具的概念化中，以支持他们对整体肿瘤学服务的认识和使用。
我们让患者参与参与式设计，以了解他们在接受常规癌症治疗期间和之后使用整体肿瘤学服务的亲身体验。
与个别参与者进行了十次参与式设计会议。会议开始时，患者讲述了他们的诊断故事以及对整体肿瘤学服务的认识和使用途径。然后，我们回顾了移动应用程序原型屏幕，以征求有关数字健康功能的反馈意见，以支持患者对缓解症状选择的导航。
肿瘤患者是症状和副作用管理的积极参与者。那些使用瑜伽、针灸和按摩的患者报告说，他们需要更早地接受关于这些服务的教育。患者对数字健康工具感兴趣，这些工具可以将症状与缓解选择相匹配，提供可搜索的信息，并促进与面对面和远程服务的简化联系。
患者通过寻找解决日常挑战和消化教育内容的方法来共同创造健康。诊所可以与患者合作，确定高优先级的需求和挑战。
需要与患者积极合作，以确定未满足的需求，并指导诊所流程和数字健康工具的开发，以增强整体肿瘤学服务在常规癌症护理中的认识和使用。
主要研究者得到了美国医疗保健研究与质量局（AHRQ K12HS026370）的支持。本文的内容完全由作者负责，不一定代表 AHRQ 的官方观点。赞助商在研究设计、数据收集、分析、报告撰写或提交发表方面没有任何作用。
