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In 2002, Charles Vincent and Angela Coulter published what would become a seminal paper in the field of patient safety.1 Their argument was simple and compelling—that patient safety could be improved through the greater involvement of patients and their families. Over the past decade, the healthcare landscape has evolved, with patients and families now firmly placed at the centre of care design and delivery in both policy, and increasingly practice. However, as highlighted in two papers2 ,3 published in this issue of BMJ Quality & Safety, there remain significant challenges in the meaningful integration of the patient perspective in improving the safety of care. Why does involving patients in safety improvement remain so hard? In this editorial, we propose a number of reasons, before considering some potential future opportunities for improving the involvement of patients and their families.
Achieving genuine patient involvement is challenging
Ocloo and Matthews outline a range of reasons why achieving genuine patient involvement presents challenges, before concluding that “current involvement practices at a national and local level often involve a narrow group of individuals…”.2 While their comments mainly relate to the lack of diversity of patient involvement in healthcare improvement, the same can also be said about the representativeness of patients within the very research that seeks to provide evidence to underpin wider involvement. Some of the most vulnerable patients are often excluded from research exploring the involvement of patients in patient safety—for example, patients unable to speak the host country language or frail elderly patients with delirium or dementia. These research restrictions make ethical sense insofar as patients cannot provide informed consent, but they skew the existing empirical literature by excluding the very patients that are most at risk for experiencing adverse events, such as the elderly4 and non-native language speakers.5 What we know …