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.