The Sumaira Foundation, Boston, MA, USA.
Global Patient Advocacy Coalition, New York City, NY, USA.
Curr Med Res Opin. 2024 Sep;40(9):1605-1613. doi: 10.1080/03007995.2024.2383732. Epub 2024 Aug 2.
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.
患者就医流程映射是一种新方法，可以直观地呈现患者与医疗体系之间可能发生的所有交互，正逐渐被医疗保健行业采用，以识别患者所面临的挑战，从而改善健康结果。然而，患者就医流程映射通常在制药公司内部使用，并未广泛发布。在这里，我对 8 名患有慢性和/或严重疾病的印度患者/护理人员进行了深入访谈；其中 7 名受访者居住在印度，完全从印度医疗体系的角度进行了阐述，而有 1 名受访者则根据自己在印度、爱尔兰和英国的生活经验进行了阐述。我利用这些访谈中的见解，结合我自己作为一名患有罕见病和多种合并症的患者的个人经历，以及从几位国际患者权益倡导者和行业专业人士那里获得的反馈，构建了一个详细的映射图，直观呈现了患有严重/慢性疾病患者的集体就医流程。该映射图不仅展示了患者就医流程的不同阶段，还体现了相关的压力水平、痛点（导致负面体验的问题）、情绪和信息搜索行为。一个重要的发现是，除了患者经历的一系列高度变化的情绪外，压力也是贯穿整个患者就医流程的一个持续因素。在许多情况下，压力是由可以避免的因素引起或加剧的，如长时间等待、繁琐的程序、信息不足或不准确以及与医疗保健专业人员互动时缺乏同理心。患者所经历的挫折源于潜在的实际/有形需求和情感/抱负需求的混合。我已经详细讨论了这些需求，并提出了一些可以在医疗体系中实施的变革建议，以更好地满足这些需求。虽然我在这里提出的分析通常是从印度医疗体系的角度出发的，并且讨论的一些观点在其他医疗体系中可能存在细微差别，但提供的主题和见解与全球任何地方的所有患者及其就医流程都相关。制药行业专业人士、医疗保健提供者和政策制定者可能会从这些见解中受益，并将其应用于做出战略决策和改变他们的方法，以改善全球患者体验和健康结果。
