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Patient and family perspectives in resilient healthcare studies: A question of morality or logic?

Whilst interest in resilient healthcare (RHC) research has increased over the past five years, our understanding of the role of patients, families and carers in supporting system resilience remains limited (Berg et al., 2018; Laugaland and Aase, 2015). The extant empirical evidence for RHC has almost exclusively been undertaken from the perspective of staff. However, evidence is emerging suggesting that patients, families and carers impact on variability and outcomes within complex health systems, and as such could be regarded as co-creators of resilience (Schubert et al., 2015 ; O'Hara et al., 2019). Within health services research and improvement, engagement of patients and the public is widespread, with an ever building evidence base examining how, and in what ways such engagement should be done (Kirwan et al., 2017). Thus, as it grows as a discipline, there is no doubt that this 'moral' argument for the involvement of patients and families in RHC research will increase. However, in this paper we argue that whilst involving patients and families in RHC research clearly remains a moral imperative, it is also – and perhaps as importantly – driven by the logic of doing so. We view the integration of patient and family perspectives in RHC studies, as comprising two discrete, but not mutually exclusive approaches: (i) Patient and family 'involvement' in RHC studies, as co-creators of evidence ; and, (ii) exploring and modeling patient and family 'functional activity' within systems, recognising their role as co-creators of resilience. We will discuss six case studies of RHC research: two that explore the role of patient and family activity within systems, and four that do not view patient and family activity as part of the system. Our aim is to demonstrate how without these perspectives, our understanding of work-as-done may be limited, and not account for variability introduced by these key actors within the system, that both supports, and compromises, the resilience of that system. In short, without understanding this variability we risk misunderstanding the resilience of our healthcare systems. Drawing on the case study examples, we present a planning support tool for the involvement of patient and family perspectives in RHC studies, which will provide practical guidance to support decisions about when, and how, to explore and document patient and family activity within systems. As key stakeholders in healthcare systems, patients and families should always be involved as co-creators of evidence in RHC studies. However, here we argue that for most healthcare systems, they are likely to additionally be co-creators of resilience.

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