Burns Kara, McBride Craig A, Patel Bhaveshkumar, FitzGerald Gerard, Mathews Shane, Drennan Judy
QUT Business School, Queensland University of Technology, Brisbane, Australia.
Queensland Children's Hospital, Children's Health Queensland, Brisbane, Australia.
J Med Internet Res. 2019 Jun 13;21(6):e12367. doi: 10.2196/12367.
Consumer-generated health data (CGHD) are any clinically relevant data collected by patients or their carers (consumers) that may improve health care outcomes. Like patient experience measures, these data reflect the consumer perspective and is part of a patient-centric agenda. The use of CGHD is believed to enhance diagnosis, patient engagement, and thus foster an improved therapeutic partnership with health care providers.
The aim of this study was to further identify how these data were used by consumers and how it influences engagement via a validated framework. In addition, carer data has not been explored for the purpose of engagement.
Study 1 used interviews with CGHD-experienced patients, carers, and doctors to understand attitudes about data collection and use, developing an ontological framework. Study 2 was a pilot trial with carers (parents) of children undergoing laparoscopic appendectomy. For 10 days carers generated and emailed surgical site photographs to a tertiary children's hospital. Subsequently, carers were interviewed about the engagement framework. In total, 60 interviews were analyzed using theme and content analysis.
This study validates a framework anchored in engagement literature, which categorizes CGHD engagement outcomes into 4 domains: physiological, cognitive, emotional, and behavioral. CGHD use is complex, interconnected, and can be organized into 10 themes within these 4 domains.
CGHD can instigate an ecosystem of engagement and provide clinicians with an enhanced therapeutic relationship through an extended view into the patient's world. In addition to clinical diagnosis and efficient use of health care resources, data offer another tool to manage consumers service experience, especially the emotions associated with the health care journey. Collection and use of data increases consumers sense of reassurance, improves communication with providers, and promotes greater personal responsibility, indicating an empowering consumer process. Finally, it can also improve confidence and satisfaction in the service.
消费者生成的健康数据（CGHD）是患者或其护理人员（消费者）收集的任何可能改善医疗保健结果的临床相关数据。与患者体验指标一样，这些数据反映了消费者的观点，并且是以患者为中心议程的一部分。人们认为使用CGHD可以加强诊断、提高患者参与度，从而促进与医疗保健提供者建立更好的治疗伙伴关系。
本研究的目的是通过一个经过验证的框架，进一步确定消费者如何使用这些数据以及它如何影响参与度。此外，尚未就护理人员数据对参与度的作用进行探讨。
研究1通过对有CGHD使用经验的患者、护理人员和医生进行访谈，以了解他们对数据收集和使用的态度，从而构建一个本体框架。研究2是对接受腹腔镜阑尾切除术儿童的护理人员（父母）进行的一项试点试验。护理人员在10天内拍摄手术部位照片并通过电子邮件发送给一家三级儿童医院。随后，就参与度框架对护理人员进行了访谈。总共使用主题和内容分析法对60次访谈进行了分析。
本研究验证了一个基于参与度文献的框架，该框架将CGHD参与度结果分为4个领域：生理、认知、情感和行为。CGHD的使用是复杂且相互关联的，可在这4个领域内归纳为10个主题。
CGHD可以激发一个参与度生态系统，并通过对患者世界的更全面了解，为临床医生提供更好的治疗关系。除了临床诊断和有效利用医疗保健资源外，数据还提供了另一种管理消费者服务体验的工具，尤其是与医疗保健过程相关的情绪。数据的收集和使用增加了消费者的安心感，改善了与提供者的沟通，并促进了更大的个人责任感，这表明这是一个赋予消费者权力的过程。最后，它还可以提高对服务的信心和满意度。
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