Background The expectation of pandemic-induced severe resource shortages has prompted authorities to draft and update frameworks to guide clinical decision-making and patient triage. While these documents differ in scope, they share a utilitarian focus on the maximization of benefit. This utilitarian view necessarily marginalizes certain groups, in particular individuals with increased medical needs. Main body Here, we posit that engagement with the disability critique demands that we broaden our understandings of justice and fairness in clinical decision-making and patient triage. We propose the capabilities theory, which recognizes that justice requires a range of positive capabilities/freedoms conducive to the achievement of meaningful life goals, as a means to do so. Informed by a disability rights critique of the clinical response to the pandemic, we offer direction for the construction of future clinical triage protocols which will avoid ableist biases by incorporating a broader apprehension of what it means to be human. Conclusion The clinical pandemic response, codified across triage protocols, should embrace a form of justice which incorporates a vision of pluralistic human capabilities and a valuing of positive freedoms.

Registry science allows for the interpretation of disease-specific patient data from secondary databases. It can be utilized to understand disease and injury, answer research questions, and engender benchmarking of quality-of-care indicators. Numerous burn registries exist globally, however, their contributions to burn care have not been summarized. The objective of this study is to characterize the available literature on burn registries. The authors conducted a scoping review, having registered the protocol a priori. A thorough search of the English literature, including grey literature, was carried out. Publications of all study designs were eligible for inclusion provided they utilized, analyzed, and/or critiqued data from a burn registry. Three hundred twenty studies were included, encompassing 16 existing burn registries. The most frequently used registries for peer-reviewed publications were the American Burn Association Burn Registry, Burn Model System National Database, and the Burns Registry of Australia and New Zealand. The main limitations of existing registries are the inclusion of patients admitted to burn centers only, deficient capture of outpatient and long-term outcome data, lack of data standardization across registries, and the paucity of studies on burn prevention and quality improvement methodology. Registries are an invaluable source of information for research, delivery of care planning, and benchmarking of processes and outcomes. Efforts should be made to stimulate other jurisdictions to build burn registries and for existing registries to be improved through data linkage with administrative databases, and by standardizing one international minimum dataset, in order to maximize the potential of registry science in burn care.

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Introduction Registry science applies observational study designs to interpret large secondary databases. It can be utilized to understand disease and injury, answer research questions, inform regulatory decision making, and engender benchmarking of quality-of-care indicators. Numerous burn registries exist globally, however their contributions to the science of burn epidemiology, care and treatment have not been summarized. The objective of this study is to characterize the available literature on burn registries. Methods We conducted a scoping review, having registered the protocol a priori. A comprehensive literature search across several databases, including the grey literature, was carried out. Studies of all methodological designs were included provided they utilized, analyzed, and/or critiqued burn registry data. Pilot projects from registries in development were included as well. Studies involving non-burn specific registries or registries from a single burn centre were excluded. Results Two hundred and sixty-eight studies were included, encompassing 16 existing burn registries. Although registry science has been used to investigate burn care since 1970, the majority of studies were published after 2007. Most studies utilized the American Burn Association Burn Registry or one of its previous versions (75.7%) and the Burns Registry of Australia and New Zealand (10.4%). Main limitations of existing registries are the inclusion of patients admitted to burn centres only, deficient capture of outpatient and long-term outcome data, and lack of data standardization across registries. Conclusions Registries are an invaluable source of data for research, delivery of care planning, and benchmarking of processes and outcomes. Efforts should be made to stimulate other jurisdictions to build and maintain burn registries, to incorporate data linkage from administrative and other secondary databases, and to standardize data collection, in order to maximize the potential of registry science in burn care.