Understanding the patient journey in sickle cell disease

A global healthcare client required a deeper understanding of the lived experience of patients with sickle cell disease, a complex, high-burden condition often shaped by both clinical and socio-economic factors.

The client needed to:

• Build a holistic view of the patient journey, from diagnosis through ongoing management
• Understand the clinical, emotional, and social impact of living with the condition
• Identify key stakeholders influencing patient experience and outcomes
• Uncover areas where they could better support patients and improve engagement

The challenge was compounded by the nature of the disease: a hard-to-reach and often underrepresented patient population, with experiences shaped by stigma, inequality, and variability in care models.

Bryter designed a qualitative-led research programme focused on capturing the authentic patient voice.

Deep patient journey mapping

We explored the full patient pathway, including:

• Diagnosis and early engagement with healthcare systems
• Ongoing disease management and treatment experiences
• Interactions with healthcare professionals and support networks

This allowed us to build a detailed, end-to-end view of the patient experience.

Accessing hard-to-reach populations

Recognising the challenges of recruitment, Bryter leveraged specialist approaches to engage:

• Patients across varied geographies and care settings
• Individuals with diverse lived experiences and disease severity

This ensured insight reflected the breadth and diversity of real-world experiences

Capturing the emotional reality

We used in-depth qualitative techniques to uncover:

• The psychological and emotional burden of living with sickle cell
• The impact of stigma and external circumstances
• The role of family, caregivers, and community in shaping experiences

Filmed outputs and immersive storytelling were used to bring these insights to life for stakeholders.

Bryter delivered a comprehensive set of outputs that translated patient understanding into actionable strategy.

This included:

• A detailed patient journey map, highlighting key pain points and intervention opportunities
• Identification of priority stakeholders and influence points
• Clear guidance on how the client could better align its proposition to patient needs
• Immersive, insight-led storytelling to drive internal engagement and empathy

The research provided a powerful evidence base to inform both product strategy and patient support initiatives, with: