At the IQVIA Institute’s Patient Advocacy Summit, panelists noted that the pandemic created major funding and support challenges for patient organisations, yet accelerated adoption of patient‑centric and decentralised technologies and heightened awareness of social determinants of health. The 21st Century Cures Act and subsequent regulations, including HL7 FHIR and the US Core Data for Interoperability, mandate seamless, secure sharing of electronic health information and prohibit data‑blocking. These rules empower patients to access their data and enable real‑world evidence to inform regulatory decisions. However, patient organisations still face resource limitations and must shift from tactical to strategic data initiatives.

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