Healthcare: Mapping 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:

1. Build a holistic view of the patient journey, from diagnosis through ongoing management
2. Understand the clinical, emotional, and social impact of living with the condition
3. Identify key stakeholders influencing patient experience and outcomes
4. 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:

1. Diagnosis and early engagement with healthcare systems
2. Ongoing disease management and treatment experiences
3. 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:

1. Patients across varied geographies and care settings
2. 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:

1. The psychological and emotional burden of living with sickle cell
2. The impact of stigma and external circumstances
3. 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:

1. A detailed patient journey map, highlighting key pain points and intervention opportunities
2. Identification of priority stakeholders and influence points
3. Clear guidance on how the client could better align its proposition to patient needs
4. 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:

1. Greater internal understanding of the real-world patient experience
2. Improved ability to identify unmet needs and support opportunities
3. Stronger alignment between commercial strategy and patient reality
4. Increased organisational focus on patient-centric decision making