Guiding and governing the complexities of digital allergy data integration and analysis: a critical national health priority for Australia

Guiding and governing the complexities of digital allergy data integration and analysis: a critical national health priority for Australia. Health services are rapidly adopting digital systems, but health data remain unstandardised and segregated across separate healthcare providers. Allergy serves as a universally important use case since type I mediated reactions to medications, foods and environmental substances, impact a plethora of health services. Australia has among the highest rates of allergic diseases globally, with 30% of the population affected, costing $A18.9b and $A44.6b in health and non-financial impacts annually. A Commonwealth Parliamentary Inquiry into Allergy and Anaphylaxis (2020) delivered 24 recommendations that underpinned foundation of the National Allergy Council and National Allergy Centre of Excellence (2022). While our National Digital Health Strategy (2023–2028) guides integration of primary and tertiary health data for clinical decision support, secure health data access for research needs prioritisation. Here we consolidate regulatory, ethical, privacy and technical considerations for accessing, integrating and analysing health data for generation of new insights to inform health system improvement. We found through document tracking and sector knowledge as many as 77 national level documents relating to legislation, policy, strategy, roadmaps, standards, frameworks, guidelines and infrastructure, from 24 different national agencies linked to seven federal government departments. This perspective on the complex national landscape of digital health regulation identifies the challenges and suggests a GATEway framework to navigate fragmented health data, distributed responsibilities, and requirements of multiple stakeholders involved in guiding and governing ethical and secure access to large-scale health data assets for research analyses. With increasing allergy prevalence, expediting digital health analytical capabilities is a critical…