In her book “Illness as Metaphor” (1978) Susan Sontag writes “everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” The journey through that other place, whether it be an acute illness or injury, chronic disease, or anything in between, can be winding and fraught with emotions, both good and bad. And while on this journey, patients are faced with critical decisions that shape their path: when to access healthcare services, which services to access, and whether to accept a doctor’s suggested course of treatment.
Therefore, understanding patients’ transactional journeys, from diagnosis to doctor’s visits, to selecting and filling prescriptions, is an important first step in understanding how and when to connect with them. But as our clients already know, understanding only how the patient moves through the healthcare system is not enough. Illness often has a ripple effect, touching not only those who are sick, but their family, friends, and other loves ones as well. The impacts of illness are felt not only physically, but in so many other domains of a person’s life: psychologically, spiritually financially, socially, and professionally. Truly connecting with patients requires and understanding their journey also requires a deep understanding of the richness and complexity of their experiences.
At Fresh Squeezed Ideas, we access this complexity by drawing on both Behavioral Science and Cultural perspectives. This allows us to capture the full dimension of patient experiences and identify critical areas of vulnerability and key decision points. Our integrated thinking also means that we can uncover and understand the social pressures, emotional drivers/barriers, and the decision-making biases that impact the individual’s behavior along the way. The output is a rich Patient Illness Journey Map that can be printed and workshopped to identify patient needs that can be met with strategic tactics.
Humans naturally use stories to make sense of difficult situations, and how someone tells the story of their illness can reveal a lot about their experience. At Fresh Squeezed Ideas, we use a range of behavioral science and cultural anthropology methods to gather stories in different forms and from different places to understand the journey through a patients’ eyes.
We often begin with a Digital Anthropology. This lets us explore how and where patients and caregivers express their experiences, identities, needs, perceptions, and behaviors in online spaces. While Digital Anthropology is the starting point, it can also provide the bulk of our insight into the experiences of patients with rare diseases or other harder-to-access populations.
When we speak to patients, caregivers, or physicians in Journey projects, we aim to create spaces where people feel comfortable sharing their stories in whatever form feels natural to them. They are the experts helping us to stand in their shoes and, down the line, walk in them with our clients. Using Deep Dive Individual Interviews, we ask patients to walk us through their experience, exploring the impacts of their condition on their emotional, physical, social, professional, and psychological well-being, and leveling down to understand their emotional drivers. In-context ethnographies, in which we visit respondents in their homes, add the benefit of seeing first-hand how illness has shaped (or not) patients’ everyday lives and deepen our understanding of the emotional significance of their stories through the non-verbal behavior our Strategists watch for.
When Fieldwork is completed, we often feel a deep sense of connection with our respondents, who so generously share the toughest parts of their lives with us, including parts they’ve never shared with others. By telling patients’ stories in their words, we transmit this empathy and sense of connection to our clients, who often remark on the intensity and richness of the insights we bring. Deep patient insights allow us to develop an empathetic and effective patient strategy, and moving on from there to clearly identify patient needs which we then turn into opportunities and tactics for the client.