The untold emotional toll of navigating the health system: the journey of patients in/from India, living with serious and/or chronic conditions

Patient journey mapping, a novel method to visualize all the interactions a patient might have with the health system, is increasingly being adopted by the healthcare industry to identify challenges patients face, with the goal of improving health outcomes. However, patient journey maps are often used internally within pharma companies and are not published widely. Here, I conducted in-depth interviews with eight Indian patients/caregivers dealing with chronic and/or serious conditions; seven of the interviewees were living in India and spoke entirely from the perspective of the Indian health system, whereas one spoke from his experience of living in India, Ireland, and the UK. Using insights from these interviews, drawing on my own experience as a patient living with a rare disease and multiple comorbidities, and seeking feedback from several international patient advocates and industry professionals, I constructed a detailed map visualizing the collective journey of patients with serious/chronic conditions. Apart from showing the different stages in the patient journey, the map visualizes the associated stress levels, pain points (issues leading to a negative experience), emotions, and information-seeking behavior. One key insight that emerges is that along with a range of highly variable emotions patients experience, stress is a consistent factor throughout the patient journey. In many cases, the stress is caused or exacerbated by factors that can be avoided, such as long wait times, procedural hassles, inadequate or inaccurate information, and lack of empathy in interactions with healthcare professionals. The frustrations patients experience stem from a mix of underlying practical/tangible and emotional/aspirational needs. I have discussed these needs at length and provided suggestions for changes that could be implemented in the health system to meet these needs better. While my analysis presented here is generally framed from the context of the Indian health system, and some points discussed might have nuances in other health systems, the themes and insights provided are relevant to all patients and their journey, anywhere in the world. Pharmaceutical industry professionals, healthcare providers, and policymakers may benefit from these insights and may apply them to make strategic decisions and changes in their approach, with the goal of improving patient experience and health outcomes globally.

患者旅程地图（Patient Journey Mapping）是一种可可视化呈现患者与医疗系统间所有交互环节的创新方法，近年来正被医疗行业广泛采用，旨在识别患者面临的各类挑战以改善健康结局。然而，此类患者旅程地图通常仅在制药企业内部使用，并未得到广泛公开。本研究对8名患有慢性和/或重症疾病的印度患者/照护者开展了深度访谈：其中7名受访者身处印度，完全从印度医疗系统的视角分享自身经历；另有1名受访者结合其在印度、爱尔兰与英国的生活经历进行阐述。基于上述访谈所得洞察，结合本人作为罕见病且伴有多种共病患者的亲身经历，并征求了多位国际患者倡导者与行业专业人士的反馈，本研究构建了一份详细的可视化地图，用以呈现重症/慢性疾病患者的集体就医旅程。该地图不仅展示了患者旅程的不同阶段，还可视化呈现了相关的压力水平、痛点（引发负面体验的问题）、情绪与信息寻求行为。本研究得出的一项核心洞察为：除患者所经历的一系列高度多样化的情绪外，压力是贯穿整个患者旅程的持续存在的因素。在诸多案例中，压力由可规避的因素引发或加剧，例如过长的等待时间、流程繁琐、信息不足或不准确，以及与医护人员互动时缺乏同理心。患者所感受到的挫败感源于潜在的实际/具象需求与情感/期望诉求的交织。本研究对这些需求进行了详尽探讨，并针对医疗系统可做出的改进提出了相关建议，以期更好地满足患者需求。尽管本研究的分析框架主要基于印度医疗系统的语境，部分讨论的观点在其他医疗系统中可能存在细微差异，但所提出的核心主题与洞察对全球范围内所有患者及其就医旅程均具有参考价值。制药行业从业者、医疗服务提供者与政策制定者可从这些洞察中获益，并将其应用于战略决策与服务优化，以在全球范围内改善患者体验与健康结局。