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In the 1991 film The Doctor, William Hurt’s character undergoes this very transformation, learning firsthand the frustrations, fears, and humanity of being on the receiving end of the healthcare system. In that movie, Hurt plays Dr. Jack MacKee, a successful but emotionally detached surgeon who undergoes a life-changing journey after being diagnosed with cancer. As a patient, he experiences the vulnerabilities, frustrations, and depersonalization often felt in the healthcare system. This shift gives him a deeper understanding of the patient experience and the importance of empathy in medicine.
One of the pivotal moments in the film involves Dr. MacKee instructing his medical students to spend time in a hospital as "patients." They wear gowns, lie in beds, and experience the bitterness of the system from the patient’s perspective. This exercise is designed to instill empathy by helping these future doctors truly understand what it feels like to be on the receiving end of care. This exercise doesn’t just teach empathy—it redefines their understanding of care and the criticality of compassion.
Pharmaceutical commercial teams are at a similar crossroads. The patient journey has undoubtedly long been regarded as a cornerstone of marketing and engagement strategies, most notably among companies in the rare and ultra-rare diseases space. Companies map out the transactional milestones—symptom recognition, diagnosis, appointments, prescriptions, treatments, follow-up, etc.—and layer on emotional components like fear, hope, and relief. However, to truly connect, to create strategies that feel less like predictable trite campaigns, and which connect with originality and empathy, pharma marketing teams need to espouse a perspective as immersive as Dr. Jack MacKee’s lesson. It’s no longer enough to observe the journey from a clinical or analytic distance; marketers must see the world as patients do, feeling the nuances of their experiences at every stage.
Technology and advancements in primary research are here to help. By embracing novel data collection methods and storytelling techniques, commercial teams and their research partners can bring the patient’s world to life in unprecedented ways. Novel immersive research tools like virtual simulations using avatars, video ethnographic studies, digital ethnography, and real-time emotional journaling allow pharma commercial teams to step into the patient’s world. When combined with advanced analytics, AI, and vivid data visualization, these insights help teams not just understand but empathize—elevating their strategies and creating lasting connections with the very people they aim to serve.
Fundamentally, a patient journey is an atlas that captures the full spectrum of experiences, interactions, and decisions a patient encounters from the onset of symptoms to diagnosis, treatment, follow-up, and beyond. This journey is both linear and cyclical, reflecting the unique and evolving path each individual patient (as the ecosystem around them) takes through their healthcare experience. It is not just a static document but a dynamic framework that combines quantitative data, such as treatment milestones and prescription trends, with qualitative insights like emotional highs and lows, perceived barriers, and unmet needs. By integrating these elements, an effective patient journey should provide a comprehensive view of the patient’s experience—an invaluable asset for pharmaceutical commercial teams.
For teams in our industry, the patient journey serves as a strategic cornerstone. It informs marketing strategies, brand positioning, and engagement plans, ensuring that every interaction resonates with the end customer’s lived experience, needs and expectations. Understanding where patients struggle—be it at the diagnosis stage, during treatment adherence, or while managing side effects—enables teams to design solutions that genuinely address those pain points. It also highlights moments of empowerment and triumph, such as when a treatment improves quality of life, which can be amplified and/or socialized to elevate trust and loyalty. By anchoring decisions in the real-world experiences of patients, pharmaceutical companies create strategies that are both effective and caring.
Beyond its strategic value, the patient journey has wide-ranging applications across the pharmaceutical commercial continuum. It can inform the development of educational materials for patients and caregivers, ensuring they address the most pressing concerns at each juncture. It also helps marketing/promotional teams craft messaging that resonates with healthcare providers (HCPs), who act as informational intermediaries in the patient’s experience. When working with rare disease communities, an in-depth patient journey is a must-have to demonstrate a solid underlying commitment to understanding that community’s unique lived experiences. Additionally, the patient journey can support the identification of market access challenges, such as insurance hurdles or logistical barriers, paving the way for targeted solutions. In short, the patient journey is a versatile resource that bridges the gap between the clinical and human aspects of healthcare, enabling pharmaceutical teams to meet the needs of patients with precision and sensitivity.
Pharmaceutical companies have long relied on a mix of qualitative and quantitative primary research methods to source the insights that populate their patient journey maps. One foundational approach involves depth interviews and focus groups with patients and caregivers, which provide rich, firsthand narratives of experiences at various stages of their healthcare odyssey. These methods uncover emotional and psychological factors that often go unnoticed in purely transactional data. Research participants share insights about first symptom onset, finding the right specialist, getting diagnosed, treatment, how they navigate healthcare systems, patient portals, and all of the barriers they faced along the way. These qualitative inputs are critical for understanding the human side of the journey, providing commercial teams with invaluable history that inform patient-centric strategies.
Another common method is quantitative survey-based research, which captures broader insights from a larger patient population. Surveys allow companies to quantify frequency of specific pain points, such as difficulties in finding a specialist or obtaining a diagnosis, treatment delays, or financial burdens associated with care. These surveys often incorporate standardized metrics like quality-of-life assessments, adherence behaviors, and satisfaction with care. Pharmaceutical research teams and their external partners analyze the responses to identify trends and can segment patients into distinct groups based on demographics, attitudes, disease progression, or treatment stages. This segmentation helps to refine the journey map by pinpointing specific leverage points – junctures of needs and concerns - for different patient cohorts.
Most pharmaceutical commercial teams also collaborate closely with different types of healthcare providers (HCPs) through interviews and advisory boards to capture insights from the clinical perspective. HCPs – not just doctors, but also other members of the treatment team - can provide a broader perspective about the diagnostic and treatment phases, offering details about decision-making processes, patient behaviors, the role of caregivers and insurance bottlenecks. This input helps to contextualize the patient journey within the broader healthcare system, shedding light on points where patients may be lost to follow up, fail to adhere to treatment, or abandon treatment altogether. HCPs also help to identify gaps in patient education and support, guiding commercial teams in developing more effective resources and interventions.
On the data analytics side, companies have traditionally leveraged medical/insurance claims and secondary prescription data to add a transactional stratum to the patient journey. These datasets provide a real-world behavioral counterpoint of how patients navigate the healthcare system, from initial physician visits to medication refills and beyond. Claims data reveals patterns in diagnosis, treatment pathways, and insurance approvals, while prescription data tracks adherence and persistency with specific therapies. By integrating this data with qualitative insights, pharmaceutical teams gain a more complete picture of the patient journey—one that combines emotional and experiential insights with the practical realities of accessing and receiving care. These traditional research methods have been instrumental in helping commercial teams absorb the complexity of patient experiences, enabling them to design strategies that are both practical and compassionate.
In recent years, ThinkGen research teams have begun leveraging in-person video and digital ethnographic studies to gain a fuller understanding of the lived experiences of patients and caregivers. In-person video ethnographic research involves observing patients and caregivers in their natural environments, whether at home, in healthcare settings, or navigating their daily lives. By doing so, our teams have uncovered behaviors, routines, and challenges that might not surface in traditional 1:1 interviews that rely upon a respondent’s recall of the events. Challenges with 1:1 interviews is that respondent recall often isn’t that detailed, is flawed, or is selective – thus biased. Digital ethnography enhances this approach, using video diaries, photo documentation, and online communities to capture authentic experiences in real-time. These methods provide a raw and more unfiltered vista on the emotional, logistical, design, and social factors influencing patients and caregivers throughout their journey.
Simulations using avatars or virtual reality (VR) have opened up entirely new possibilities for immersing researchers and commercial teams in the patient journey. These tools allow participants to experience firsthand what it feels like to live with a specific condition like multiple sclerosis, dermatologic conditions, to rare diseases like pulmonary arterial hypertension. For example, VR simulations can replicate the disorientation of living with Alzheimer’s disease or the limitations imposed by gout pain. These immersive experiences not only help researchers empathize with patients but also create a shared understanding across commercial teams, fostering alignment on patient-centric strategies. Simulations can also involve avatars that interact in digital environments, modeling decision-making processes and responses to hypothetical scenarios, such as selecting among treatment options or managing side effects.
Another innovative method involves the use of digital diaries, where patients and caregivers log their experiences in real time through mobile apps or wearable devices. These diaries capture data on daily symptoms, medication adherence, mood fluctuations, and healthcare interactions. Advanced platforms can even integrate biometric data from wearables, providing an additional layer of insight into patients’ physical and emotional states in various settings, or various timepoints during the day. By collecting this longitudinal data, pharmaceutical teams can track trends and pinpoint moments ranging from empowerment, to frustration, to disengagement. This granular level of detail helps identify opportunities to support patients more effectively, whether through tailored interventions or new resources.
In addition to these methods, the integration of artificial intelligence (AI) and natural language processing (NLP) affords another avenue to cull deeper insights. AI tools can analyze unstructured data, such as patient reviews on social media, online forums, and support groups, to identify recurring themes and sentiment trends. For instance, NLP can extract insights about the emotional language patients use to describe their experiences, revealing unmet needs or misunderstanding about their conditions. Combining these insights with traditional primary research methods enables pharmaceutical commercial teams to construct more nuanced and dynamic patient journey maps—ones that not only represent the breadth of patient experiences but also capture their depth in ways previously unimaginable.
New modalities of data storytelling and visualization are revolutionizing how pharmaceutical teams interpret and communicate patient journey insights. Traditional presentations of data—static charts, graphs, and maps—are useful, but may are limited in reflecting the depth and nuance of the patient experience. By adopting more creative and immersive approaches, we have helped transform the patient journey from a flat diagram that looks like Chutes and Ladders into a vivid, multidimensional story that engages both hearts and minds. These innovative tools bring insights to life, reminding teams of the real people behind the data and inspiring them to craft strategies with greater empathy and purpose.
One powerful approach involves immersive visual storytelling through animation and 3D visualization. These tools allow commercial teams to explore the patient journey dynamically, visualizing data points such as treatment pathways, emotional touchpoints, and access barriers in a spatial and interconnected format. For instance, a 3D visualization of the journey could highlight critical moments where patients are most likely to disengage or face challenges, using color coding and motion to emphasize transitions between stages. Interactive features enable users to double click into specific patient personas or segments, offering a more granular view of their unique experiences and struggles.
Another groundbreaking modality is artistic and experiential storytelling, such as the creation of video narratives, virtual reality (VR) simulations, or even large-scale sensory art installations. For example, a VR experience could immerse team members in the perspective of a patient navigating their journey, allowing them to "feel" what it’s like to live with a particular condition or interact with healthcare systems. Similarly, videos or animated stories that interweave real patient voices, imagery, and data can evoke emotional resonance and foster a deeper connection to the patient community. One client asked us to develop a walk-through room full of life-sized patient portraits, shot in the style of Richard Avedon, accompanied by poignant quotations reflective of their disease-related experiences. These creative approaches not only make the data more memorable but also serve as a constant reminder of the team’s ultimate mission: improving lives.
An important caveat: these newer technology-driven approaches can be costly and time-consuming, but when done right, can serve a range of functions within the pharmaceutical company.
By combining advanced visualization technologies with storytelling techniques, pharmaceutical teams can transform patient journey insights into a surround-sound and truly multidimensional experience. These tools don’t just educate—they inspire, encouraging marketers to see beyond the numbers and into the lived realities of patients and caregivers. This enriched understanding informs strategies that are not only data-driven but also profoundly human-centered, making the patient journey a guiding light for meaningful innovation.
When a leading pharmaceutical company sought to better understand the lived experiences of people suffering from a chronic pain condition, ThinkGen recommended and ultimately implemented a multi-faceted digital ethnography approach to gain deep insights. Over the course of several weeks, sixteen participants were guided though a carefully designed set of exercises to document their daily lives through mobile journaling, photography, and self-shot video. This immersive approach allowed our research team to capture not just data points but the candid, unfiltered realities of living with chronic pain - in the moment. Participants shared intimate instances, ranging from the physical challenges of simple tasks like getting into bed to the emotional toll of isolation and hopelessness. The collected quilt of media offered an intense, day-by-day portrait of their suffering, illuminating how pain shaped their routines, relationships, and sense of self.
Through thoughtful analysis of the multimedia submissions, ThinkGen identified recurring themes that provided a more nuanced perspective of journeys of this patient cohort. While the chronic pain was pervasive, participants also highlighted instances of relief and peace—whether through supportive interactions with other people suffering from the condition, mindfulness practices, or places they would go. Being at the beach – sinking into the sand and feeling cold seawater - proved a way to alleviate this type of pain. These insights painted a holistic picture of the condition, balancing the burdens of pain with the resilience and coping mechanisms of those affected. The findings, presented through a dynamic mix of dramatic first-person narratives, photos and video – assisted the commercial team to develop a more empathetic and targeted engagement strategy. The learnings helped ensure that messaging and support resources aligned with the real-world needs and experiences of their audience.
This case study demonstrates the capacity of digital ethnography in uncovering the human stories behind the data, providing a foundation for truly patient-centric strategies.
This is the power of elevating patient journey research, where pharmaceutical commercial teams move beyond the surface and uncover insights that truly resonate. In an era where empathy is the currency of meaningful engagement, especially in rare and ultra-rare, traditional approaches to patient journey mapping simply aren’t enough.
As the pharmaceutical industry continues to evolve, so too must the methods used to understand and engage with patients. The patient journey, once regarded as a static roadmap, is now a dynamic and multidimensional cornerstone of effective commercialization. By embracing new research methods, advanced data analytics, and innovative storytelling techniques, pharmaceutical commercial teams can move beyond surface-level insights to uncover the rich, nuanced realities of patient and caregiver experiences. These tools not only enhance the precision of strategies but also ensure they are deeply empathetic, aligning with the ultimate goal of improving patient outcomes.
