Understanding patient experience in healthcare is increasingly important and desired by medical professionals in a patient-centered care approach. Healthcare discourse on social media presents an opportunity to gain a unique perspective on patient-reported experiences, complementing traditional survey data. These social media reports often appear as first-hand accounts of patients' journeys through the healthcare system, whose details extend beyond the confines of structured surveys and at a far larger scale than focus groups. However, in contrast with the vast presence of patient-experience data on social media and the potential benefits the data offers, it attracts comparatively little research attention due to the technical proficiency required for text analysis. In this paper, we introduce the Design-Acquire-Process-Model-Analyse-Visualise (DAPMAV) framework to provide an overview of techniques and an approach to capture patient-reported experiences from social media data. We apply this framework in a case study on prostate cancer data from /r/ProstateCancer, demonstrate the framework's value in capturing specific aspects of patient concern (such as sexual dysfunction), provide an overview of the discourse, and show narrative and emotional progression through these stories. We anticipate this framework to apply to a wide variety of areas in healthcare, including capturing and differentiating experiences across minority groups, geographic boundaries, and types of illnesses.

翻译：理解医疗保健中的患者体验在以患者为中心的护理方法中越来越重要，且为医疗专业人员所期望。社交媒体上的医疗保健话语为获取患者报告体验的独特视角提供了机会，补充了传统的调查数据。这些社交媒体报告通常以患者在医疗系统中的第一手经历形式出现，其细节超越了结构化调查的限制，且规模远超焦点小组。然而，与社交媒体上患者体验数据的广泛存在及其潜在益处相比，由于文本分析所需的技术能力，该领域吸引的研究关注相对较少。本文引入了设计-获取-处理-建模-分析-可视化（DAPMAV）框架，概述了从社交媒体数据中捕获患者报告体验的技术和方法。我们在一项针对/r/ProstateCancer中前列腺癌数据的案例研究中应用该框架，展示了该框架在捕获患者关注的具体方面（如性功能障碍）中的价值，提供了话语概述，并展示了通过这些故事叙述和情感进展。我们预期该框架可广泛应用于医疗保健的多个领域，包括捕获和区分少数群体、地理边界和疾病类型中的体验。