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Background A recent review of outcome reporting in out of hospital cardiac arrest (OHCA) clinical trials detailed a lack of transparency and heterogeneity, highlighting the need to establish a core outcome set (COS)(Whitehead et al., 2015). Moreover, the review highlighted the dominance of outcomes which focused on the pathophysiological manifestations of the event and clinicians’ perspectives, with an absence of outcomes which sought to explore the patients’ perspective. To ensure the development of a COS with relevance and meaning to all stakeholders patients, clinicians and researchers, we sought to explore the views of patients and their partners to improve our understanding of the outcomes that really matter.

‘Getting back to normal’: using patients’ lived experience to inform a core outcome set for cardiac arrest clinical trials