Medical Management Centre, Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
Centre for Clinical Research, County of Västmanland, Uppsala University, Västerås, Sweden.
J Med Internet Res. 2020 Sep 21;22(9):e19195. doi: 10.2196/19195.
Worldwide, the number of people with Parkinson's disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs.
This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care.
Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported.
The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality).
This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/11278.
据预测，2005 年至 2030 年期间，全球帕金森病（PD）患者人数将增加一倍。慢性病管理需要患者和医疗保健专业人员（HCPs）之间积极协作和知识交流，以实现最佳健康结果，我们将其描述为共同护理。电子健康服务有可能支持 PD 患者（PwP）和 HCPs 之间共同护理的实现。
本研究旨在探索如何通过电子健康支持来实现 PD 护理中的共同护理。更具体地说，本研究探讨了 PwP 和 HCP 实现共同护理的期望和所需的电子健康功能。
采用参与式设计原则，在一系列 4 个为期半天的共同设计工作坊中确定共同护理需求和设计思路。样本包括 7 名（4 名女性）PwP 和 9 名（4 名女性）HCP，包括 4 名神经科医生、3 名护士和 2 名物理治疗师。共同设计过程产生了一个功能原型，在最后一个工作坊中由共同设计参与者进行了评估。数据通过参与者在前三轮工作坊中制作的笔记卡和第三轮和第四轮工作坊中的焦点小组讨论收集。数据使用定性主题分析进行分析。工作坊系列结束后，该原型在正在进行的 PD 研究的小型博览会上进行了展示，并使用自行开发的问卷对 37 名受访者（31 名 PwP（14 名女性）和 6 名非正式护理人员（3 名女性）进行了评估。报告描述性统计数据。
数据的定性分析产生了 2 个主要主题。第一个主题是核心电子健康功能及其预期价值，描述了支持 PwP 和 HCP 之间 PD 共同护理的 6 项预期电子健康功能：（1）自我跟踪，（2）预访表格，（3）图形可视化，（4）临床决策支持，（5）自我护理建议和（6）异步通信。第二个主题是个人和组织约束，描述了成功实施电子健康共同护理服务所需解决的约束。个人约束包括电子健康素养和接受度；组织约束包括团队合作和行政工作量。大多数问卷受访者（31/37，84%）认为他们将受益于类似于演示原型的电子健康服务。大多数受访者（每个功能范围从 86%到 97%）都认为所有原型功能都非常重要或重要。
本研究增加了我们对 PD 共同护理如何实施的认识。共同护理意味着从偶发性常规驱动的护理转变为更灵活的护理管理，这种管理由患者和 HCP 的共同需求驱动，并通过他们之间的积极信息交换以及自动化信息处理来生成患者特定的建议来支持。需要进一步研究来进一步探索慢性病管理中共同护理的概念，以及它对自我护理和医疗保健的意义。
国际注册报告标识符（IRRID）：RR2-10.2196/11278。
