Austin Lynn, Sharp Charlotte A, van der Veer Sabine N, Machin Matthew, Humphreys John, Mellor Peter, McCarthy Jill, Ainsworth John, Sanders Caroline, Dixon William G
National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, Greater Manchester, Salford Royal NHS Foundation Trust, Salford.
National Institute for Health Research School for Primary Care Research, The University of Manchester.
Rheumatology (Oxford). 2020 Feb 1;59(2):367-378. doi: 10.1093/rheumatology/kez207.
To establish the acceptability and feasibility of collecting daily patient-generated health data (PGHD) using smartphones and integrating PGHD into the electronic health record, using the example of RA.
The Remote Monitoring of RA smartphone app was co-designed with patients, clinicians and researchers using qualitative semi-structured interviews and focus groups, including selection of question sets for symptoms and disease impact. PGHD were integrated into the electronic health record of one hospital and available in graphical form during consultations. Acceptability and feasibility were assessed with 20 RA patients and two clinicians over 3 months. A qualitative evaluation included semi-structured interviews with patients and clinicians before and after using the app, and audio-recordings of consultations to explore impact on the consultation. PGHD completeness was summarized descriptively, and qualitative data were analysed thematically.
Patients submitted data on a median of 91% days over 3 months. Qualitative analysis generated three themes: RA as an invisible disease; providing the bigger picture of RA; and enabling person-centred consultations. The themes demonstrated that the system helped render patients' RA more visible by providing the 'bigger picture', identifying real-time changes in disease activity and capturing symptoms that would otherwise have been missed. Graphical summaries during consultations enabled a more person-centred approach whereby patients felt better able to participate in consultations and treatment plans.
Remote Monitoring of RA has uniquely integrated daily PGHD from smartphones into the electronic health record. It has delivered proof-of-concept that such integrated remote monitoring systems are feasible and can transform consultations for clinician and patient benefit.
以类风湿关节炎（RA）为例，确定使用智能手机收集患者日常生成的健康数据（PGHD）并将其整合到电子健康记录中的可接受性和可行性。
通过定性半结构化访谈和焦点小组，与患者、临床医生和研究人员共同设计了RA远程监测智能手机应用程序，包括选择症状和疾病影响的问题集。PGHD被整合到一家医院的电子健康记录中，并在会诊期间以图形形式提供。在3个月内对20名RA患者和两名临床医生进行了可接受性和可行性评估。定性评估包括在使用应用程序前后对患者和临床医生进行半结构化访谈，以及对会诊进行录音以探讨对会诊的影响。对PGHD的完整性进行了描述性总结，并对定性数据进行了主题分析。
患者在3个月内中位数有91%的天数提交了数据。定性分析产生了三个主题：RA是一种无形的疾病；提供RA的整体情况；实现以患者为中心的会诊。这些主题表明，该系统通过提供“整体情况”、识别疾病活动的实时变化以及捕捉否则会被遗漏的症状，帮助使患者的RA更明显。会诊期间的图形总结实现了一种更以患者为中心的方法，使患者感觉更有能力参与会诊和治疗计划。
RA远程监测将智能手机的日常PGHD独特地整合到电子健康记录中。它提供了概念验证，即这种集成的远程监测系统是可行的，并且可以为临床医生和患者带来益处，改变会诊方式。
