Project Overview

A leading global insights firm commissioned us to capture the lived reality of Chinese patients affected by an ultra-rare condition. The two-stage project combined self-recorded video diaries with follow-up depth interviews, creating an immersive view of how the disease shapes daily routines, emotional wellbeing and family dynamics. Findings will enrich real-world evidence and guide biopharma teams developing new therapies for this underserved community.

Key Learning Objectives

• Daily-Life Impact – Document how symptoms, mobility limits and care routines influence work, leisure and relationships.

• Treatment Experience – Surface patients’ subjective views on current medicines, adherence challenges and perceived gaps.

• Family & Caregiver Burden – Understand the practical, financial and emotional load shared by close relatives or partners.

• Communication Needs – Identify content and support formats that help patients feel “seen” by clinicians, payors and society.

Methodology

• Stage 1: Video Ethnography

  • Eight patients of varied age and gender filmed 5- to 10-minute diaries over two weeks, optionally including caregivers.

  • Collaboration with China’s largest rare-disease advocacy organization ensured ethical recruitment and informed consent.

• Stage 2: In-Depth Web Interviews

  • One-hour one-on-one sessions explored disease narratives in greater detail, guided by trained ethnographers.

• Synthesis

  • Thematic coding, journey mapping and sentiment analysis generated a multi-layered portrait of life beyond the clinic.

Key Deliverables

• Real-World Evidence Videobank featuring curated clips and annotated transcripts for medical-education use.

• Patient Journey Atlas visualizing symptom arcs, treatment touchpoints and unmet needs across the care continuum.

• Insight Report outlining therapy-design implications, support-service opportunities and communication guidelines.

• Stakeholder Showcase Deck to help industry and advocacy partners amplify patient voices while remaining fully compliant with privacy standards.