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From backlog to blind spots: improving data visibility across autism and ADHD pathways in England
Sima Rafiei1, Gemma Cartwright2, Ben Atkins3
1Department of Applied Health, Warwick Medical School, University of Warwick, Coventry, UK.
Abstract:
All-age autism and attention-deficit hyperactivity disorder pathway reform in England is often framed around waiting lists and capacity. However, backlog data alone cannot show how people move through referral, triage, assessment, support and follow-up, or where inequities and unmet need are hidden. Current data also struggle to distinguish confirmed diagnosis, suspected diagnosis, disclosure, self-identification and co-occurring needs. This creates pathway blindness: systems can see pressure, but not flow, fairness or diagnostic visibility. We argue that reform should begin with structured system mapping, agreed definitions and a realistic minimum data-set before dashboards or predictive analytics are used to guide service change.
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