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<p>People with a rare disease (PwRD) often face more challenges than the wider population in obtaining a diagnosis and accessing services. These challenges can be framed as health inequities, i.e. differences in health opportunities and outcomes which are avoidable, systemic and unfair. We previously undertook a scoping review on the extent and nature of evidence on health inequities experienced by PwRD in relation to diagnosis and service access. In this follow up paper, we describe how we used a conceptual framework to develop a toolkit which maps the identified health inequities across the patient care pathway. The toolkit aims to show how health inequities are structurally interrelated, and where targeted interventions are needed to address inequity. Using Diderichsen and Hallqvist’s framework for describing pathways from social contexts to health outcomes, we categorised the identified health inequities as mechanisms and outcomes which were mapped onto contexts in the patient care pathway. The toolkit is presented as an interactive slide deck which facilitates the exploration of different types of inequity across the patient care pathway, using hyperlinks which take the user to more information on each of the inequities. This is structured in two main sections: (1) receipt of a diagnosis and (2) access to services after diagnosis. The focus is on UK settings. We anticipate that the toolkit can be used to raise awareness of health inequities for PwRD, and to inform the development of interventions for addressing health inequities. The toolkit is accessible in an accompanying file to this paper.</p>

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Evidence of health inequities across the rare disease patient care pathway: development of a toolkit using a conceptual framework

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年6月2日

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  • Simon Briscoe,
  • Clara Martin Pintado,
  • Ruth Garside,
  • Jo Thompson Coon,
  • Hassanat M. Lawal,
  • Noreen Orr,
  • Liz Shaw,
  • G. J. Melendez-Torres

摘要

People with a rare disease (PwRD) often face more challenges than the wider population in obtaining a diagnosis and accessing services. These challenges can be framed as health inequities, i.e. differences in health opportunities and outcomes which are avoidable, systemic and unfair. We previously undertook a scoping review on the extent and nature of evidence on health inequities experienced by PwRD in relation to diagnosis and service access. In this follow up paper, we describe how we used a conceptual framework to develop a toolkit which maps the identified health inequities across the patient care pathway. The toolkit aims to show how health inequities are structurally interrelated, and where targeted interventions are needed to address inequity. Using Diderichsen and Hallqvist’s framework for describing pathways from social contexts to health outcomes, we categorised the identified health inequities as mechanisms and outcomes which were mapped onto contexts in the patient care pathway. The toolkit is presented as an interactive slide deck which facilitates the exploration of different types of inequity across the patient care pathway, using hyperlinks which take the user to more information on each of the inequities. This is structured in two main sections: (1) receipt of a diagnosis and (2) access to services after diagnosis. The focus is on UK settings. We anticipate that the toolkit can be used to raise awareness of health inequities for PwRD, and to inform the development of interventions for addressing health inequities. The toolkit is accessible in an accompanying file to this paper.