Patient engagement (PE) has been defined as patients (and their families or representatives) and health professionals working in active partnership at various levels across the health care system to improve health and health care [1–3]. The definition recognizes that patients can be engaged at the organizational or system level to improve the design of health services. Examples include, but are not limited to, serving on hospital or government committees ‘to help with everything, from paint chips to policy’  or on panels that develop clinical practice guidelines . The definition also recognizes that patients can be engaged at the level of their own care, sometimes referred to as patient centred care, which is the focus of our study [1–3]. PE in their own care can vary according to patient circumstances and preferences from receiving information or education to being an active partner in the care team by setting goals and taking part in decisions . Methods or tools to implement or achieve PE in their own care include, but are not limited to lay summaries, pre-consultation question prompts, decision aids, shared decision-making and self-management programmes [1–3].