Democratising genomic data access
2024
When NOT shipping is a win: empowering health program through insights intelligence leading to purposeful pivot saving ≈$12M in rework
Objectives
Childhood cancer is complex and unique, requiring dedicated research approaches. ZERO's mission is to understand why children develop cancer and how best to treat it, ensuring every child gets their chance at a cancer-free life. The biggest challenge for democratising ZERO's genomic data was the fragmented access by clinicians and scientists.
We partnered with Beacon (GA4GH Beacon v2) to tackle the challenge. Our main objectives were to:
→ empower researchers with real-time access to complex genomic/clinical data from the ZERO program.
→ prioritise ethical compliance by embedding legal/consent workflows into the user journey.
→ facilitate actionable insights through transparent exploration of cohort-level data.
Approach and process
Guided by problem-space exploration, I focused on:
→ understanding stakeholders’ underlying needs, constraints, and decision-making processes.
→ aligning technical, clinical, and ethical requirements through iterative collaboration.
The driving principles during the project:
Ethics-Driven Design: Prioritized patient privacy and legal compliance as non-negotiable pillars.
Collaborative Problem-Solving: Bridged gaps between researchers, clinicians, data scientists, and legal teams through iterative feedback loops.
Modular Flexibility: Designed adaptable workflows to accommodate evolving research needs (e.g., urgent clinical requests).
To kick-off the end-to end design process i started with Problem Framing & Mental Model Mapping
Stakeholder Workshops: Collaborated with clinicians, researchers, legal teams, and developers to map pain points:
Researchers struggled to navigate fragmented data silos and slow approval workflows.
Legal teams emphasized compliance risks (e.g., patient consent, data anonymity).
Mental Models: Defined user decision-making patterns (e.g., "How do researchers prioritize data requests?") to guide feature prioritization.
2. Co-Design with Constraints
Dynamic Filtering & Querying:
Designed a unified interface allowing cohort-level exploration by cancer type, mutation, or demographics.
Prioritized clarity over complexity—e.g., hover-to-view genomic annotations for non-technical users.
Secure Authentication:
Integrated CILogon (supporting 5,000+ identity providers) to streamline access while maintaining audit trails.
3. Iterative, Compliance-First Prototyping
Low-Fidelity Testing:
Prototyped core workflows (data query → request → approval) and tested with researchers to identify friction points.
Ethical Guardrails:
Embedded consent reminders and restricted access tiers (public vs. authenticated users).
Automated urgent clinical requests to bypass monthly DAC cycles, ensuring compliance without delays.
Balanced data granularity (e.g., genomic variants) with anonymity safeguards to protect patient identities.
Intuitive User Experience
Data Navigation & Filtering: Implemented dynamic filters allowing real-time queries of 4,117 biosamples, 38 diseases, and 1,019 individual cancer profiles without requiring specialized technical training.
Bespoke Interface: Tailored the UI to meet various skill levels—from veteran researchers looking to run specific genomic queries, to clinicians exploring broader diagnostic trends.
Lightweight Technical Infrastructure
Agile Collaboration: Partnered with the engineering team to iterate quickly on user feedback and continuously refine the interface.
Impact
$12 M
forecasted savings
4.7 x ROI
on research investment through risk mitigation
With over 1,019 participants from the ZERO2 clinical trial, covering all children with cancer in Australia and New Zealand, researchers can now view, filter, and query this rich dataset in real time, removing long-standing technical barriers and enhancing the global understanding of childhood cancer.
MY ROLE
Product Design Lead
Strategy
end-to-end Design
the team behind
