At IQVIA’s 2024 Health Equity Summit, patient organisations were highlighted as pivotal in driving equity through strong data strategies. Effective approaches include strategic planning with clear goals, multi-stakeholder collaboration, and leveraging data for advocacy. Challenges remain: limited resources, privacy concerns, fragmented systems, and difficulty accessing patient-centric insights. A case study with Prostate Cancer Research showed how integrating patient-contributed data with FAIR principles and NHS Secure Data Environments can accelerate research and care. Empowering organisations with tools and partnerships ensures sustainable impact and improved outcomes.

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