Understanding the burden of illness: steps towards an ontology of patient experience

Abstract

Burden is a key concept in healthcare research, reflecting the challenges that illness and its management impose on patients, caregivers, and healthcare systems. While burden has been the focus of considerable scientific and clinical attention, the burden concept has attracted little in the way of theoretical attention. This has led to the absence of definitional consensus, which has, in turn, complicated the effort to provide ontological support for burden-related research. The present paper seeks to address these gaps by introducing the Biomedical Burden Ontology (BBO), a formal framework designed to represent and integrate burden-related data within biomedical informatics. The BBO is grounded in the Atlassian view of burden, which conceptualises burden as an individual's obligatory participation in non-preferred processes. The ontology is implemented in the Web Ontology Language (OWL) and leverages Basic Formal Ontology (BFO), alongside existing ontologies such as the Mental Functioning Ontology (MFO) and the Emotion Ontology (MFOEM). Additionally, the BBO incorporates insights from predictive processing theories of brain function, framing burden as a disruption of an individual’s capacity to fulfil 'optimistic' predictions. By providing a structured approach to representing burden, the BBO facilitates research into patient experience, supports the development of minimally disruptive medicine, and enables more effective measurement of burden in clinical and policy contexts.

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Identifiers

ORCID for Paul Smart: orcid.org/0000-0001-9989-5307

ORCID for Nic Fair: orcid.org/0000-0003-1566-4689

ORCID for Michael Boniface: orcid.org/0000-0002-9281-6095

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