Bradway Meghan, Morris Rebecca L, Giordanengo Alain, Årsand Eirik
Norwegian Centre for E-health Research, University Hospital of North Norway, P.O. Box 35, N-9038, Tromsø, Norway.
Department of Clinical Medicine, Faculty of Health Sciences, UiT The Arctic University of Norway, 9037, Tromsø, Norway.
BMC Health Serv Res. 2020 Nov 30;20(1):1104. doi: 10.1186/s12913-020-05955-3.
Individuals with diabetes are using mobile health (mHealth) to track their self-management. However, individuals can understand even more about their diabetes by sharing these patient-gathered data (PGD) with health professionals. We conducted experience-based co-design (EBCD) workshops, with the aim of gathering end-users' needs and expectations for a PGD-sharing system.
N = 15 participants provided feedback about their experiences and needs in diabetes care and expectations for sharing PGD. The first workshop (2017) included patients with Type 2 Diabetes (T2D) (n = 4) and general practitioners (GPs) (n = 3). The second workshop (2018) included patients with Type 1 Diabetes (T1D) (n = 5), diabetes specialists (n = 2) and a nurse. The workshops involved two sessions: separate morning sessions for patients and healthcare providers (HCPs), and afternoon session for all participants. Discussion guides included questions about end-users' perceptions of mHealth and expectations for a data-sharing system. Activities included brainstorming and designing paper-prototypes. Workshops were audio recorded, transcribed and translated from Norwegian to English. An abductive approach to thematic analysis was taken.
Emergent themes were mHealth technologies' impacts on end-users, and functionalities of a data-sharing system. Within these themes, similarities and differences between those with T1D and T2D, and between HCPs, were revealed. Patients and providers agreed that HCPs could use PGD to provide more concrete self-management recommendations. Participants' paper-prototypes revealed which data types should be gathered and displayed during consultations, and how this could facilitate shared-decision making.
The diverse and differentiated results suggests the need for flexible and tailorable systems that allow patients and providers to review summaries, with the option to explore details, and identify an individual's challenges, together. Participants' feedback revealed that both patients and HCPs acknowledge that for mHealth integration to be successful, not only must the technology be validated but feasible changes throughout the healthcare education and practice must be addressed. Only then can both sides be adequately prepared for mHealth data-sharing in diabetes consultations. Subsequently, the design and performance of the joint workshop sessions demonstrated that involving both participant groups together led to efficient and concrete discussions about realistic solutions and limitations of sharing mHealth data in consultations.
糖尿病患者正在使用移动健康(mHealth)来跟踪他们的自我管理情况。然而,通过与医疗专业人员共享这些患者收集的数据(PGD),患者能够更深入地了解自己的糖尿病状况。我们开展了基于体验的协同设计(EBCD)研讨会,旨在收集终端用户对PGD共享系统的需求和期望。
N = 15名参与者提供了关于他们在糖尿病护理方面的体验和需求以及对共享PGD的期望的反馈。第一次研讨会(2017年)包括2型糖尿病(T2D)患者(n = 4)和全科医生(GP)(n = 3)。第二次研讨会(2018年)包括1型糖尿病(T1D)患者(n = 5)、糖尿病专家(n = 2)和一名护士。研讨会包括两个环节:上午分别为患者和医疗保健提供者(HCP)安排单独的会议,下午为所有参与者安排会议。讨论指南包括关于终端用户对mHealth的看法以及对数据共享系统的期望的问题。活动包括头脑风暴和设计纸质原型。研讨会进行了音频录制,并从挪威语转录和翻译成英语。采用了归纳法进行主题分析。
浮现出的主题是mHealth技术对终端用户的影响以及数据共享系统的功能。在这些主题中,揭示了T1D和T2D患者之间以及HCP之间的异同。患者和提供者一致认为,HCP可以使用PGD提供更具体的自我管理建议。参与者的纸质原型展示了在会诊期间应收集和显示哪些数据类型,以及这如何促进共同决策。
多样且有差异的结果表明需要灵活且可定制的系统,使患者和提供者能够一起查看摘要,并选择探索细节,识别个体面临的挑战。参与者的反馈表明,患者和HCP都承认,要使mHealth整合成功,不仅技术要经过验证,还必须解决整个医疗教育和实践中可行的变革问题。只有这样,双方才能为糖尿病会诊中的mHealth数据共享做好充分准备。随后,联合研讨会环节的设计和表现表明,让两个参与群体共同参与能够就会诊中共享mHealth数据的现实解决方案和局限性进行高效且具体的讨论。