Consumer involvement; the system says 'No.'

Abstract

The importance of authentic consumer engagement to shape decisions in health care is now well recognised. Both the National Health and Medical Research Council and Cancer Council conceptualise consumer involvement as a process that requires consumer capability and organisational capacity and emphasise that organisations should commit to acting on outcomes that have involved consumers. In this perspective piece, we share our experience of working with consumers to develop strategies that aimed to optimise referrals to an evidence-based and cost-effective intervention; a pulmonary rehabilitation program. Although we were successful at implementing some of the co-design strategies and were able to demonstrate an increase in referrals, we were surprised that many of the strategies, which were seemingly simple, could not be implemented due to bureaucratic barriers. Based on our experience, given their ability to navigate bureaucratic barriers within the system, future health researchers should consider actively recruiting senior hospital staff to be part of the co-design process from project inception.