Protocol for an eDelphi study to identify consensus on policy metrics which should be included in future assessments of the England Rare Diseases Action Plans

2025-04-28 health policy Title + abstract only

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IntroductionGovernments create policies to address societal needs and then assess their effectiveness through policy metrics. The UK Rare Diseases Framework and its England Rare Diseases Action Plans aim to improve the lives of people with lived experience of rare diseases and their carers. Reaching these goals requires more effective engagement with those least likely to interact with NHS services. This paper outlines a protocol to identify relevant high-level policy metrics while engaging unde...