Patient and public involvement in the planning of major system change

BackgroundInternationally, citizens, patients and family carer-givers are increasingly being positioned as collaborators in the labour required to produce and maintain health. 135–139 This includes involvement in individual patient care, research, and planning, development and improvement of health services. 140–142 Carman et al. 143 argue that such involvement challenges a dominant paternalistic approach to health care and systems and has the potential to transform patients, improve outcomes through better systems of care and reduce health-care costs. Yet involvement concepts and practices are characterised by ambiguity in terms of terminology, 144, 145 rationales, 146, 147 values 148 and the attributes of those who are invited or choose to be ‘involved’. 146, 149 The literature also suggests an anxiety that involvement aspirations are not being met, because involvement practices are tokenistic rather …