The patient journey starts with listening: Why the human side of healthcare matters

In healthcare, the patient journey is a concept used to map everything a person goes through from first symptoms to care and beyond. It is often described in terms of appointments, tests, and treatments – a series of interactions with the healthcare system.
 
For Helen Allvin, Global Patient Advocacy Lead at Orion, the focus is on the human behind the diagnosis.  

“It is about the full lived experience from first symptoms and diagnosis through treatment, follow-up, and everyday life,” she says.  

The patient journey includes both clinical and non-clinical experiences – worries, uncertainty, decision-making, relief, and day-to-day adaptation. 

Such experiences cannot be captured by clinical data alone.
 
“These elements are essential to understanding what truly matters. We would miss a lot if we were not adding the emotional part, the psychological part, and what really happens,” Allvin says.

Unique paths with some common themes

A patient’s journey often begins well before any contact with a healthcare professional – when symptoms appear, change, or begin to interfere with daily life. From that point onwards, patients navigate diagnosis, treatment decisions, and life during and after therapy. 

Orion places a strong emphasis on working in close collaboration with patients and patient organisations.  

“The insights help us understand real-world experiences, support safe and appropriate use of medicines, and ensure patient voices are reflected throughout development and safety processes.” 
While there are common patterns across patient journeys, each journey is also unique and shaped by the disease, its severity, and personal circumstances. A patient’s coping strategies, motivations, and emotional responses influence each stage.  

For Orion, understanding these lived experiences can improve protocol design, trial materials, patient recruitment, support tools, communication, and even scientific and commercial decision-making. In short, it helps ensure Orion’s work aligns with real patient needs, not assumptions. Patient journey mapping turns these insights into a clear, visual narrative. 

In practical terms, patient journey mapping is structured and multi-layered. It often starts with mapping patient advocacy groups to identify relevant organisations in a specific disease area and understand the community landscape. That includes organisations’ missions and how they support people through research, education, awareness, funding, or clinical trials.  

“Literature reviews and social media listening then help us understand what patients are already discussing publicly and reveal common challenges and themes. After that, we conduct interviews with patients, caregivers, and healthcare professionals to build a deeper, fuller picture of the journey,” Allvin says.

Seeing the whole person

The benefits of patient journey mapping can be very concrete for patients and their families:  
clearer and more relevant information,  better tools for patients, caregivers, and healthcare teams, and  smoother care experiences.  

Allvin also points to the importance of language. By understanding how patients describe their own experiences, she says, Orion can create materials that feel more relatable, understandable, and more connected to their everyday reality. 

“By listening, learning, and meaningfully integrating patients’ experiences, Orion strives to take a more holistic approach and improve outcomes in ways that matter to patients.”