We have to set the bar higher: towards consumer leadership, beyond engagement or involvement

Abstract

Understanding of the benefits of consumer-led health policy, practice, research and education has been developing for decades. However, barriers to genuine, non-tokenistic consumer leadership remain across the health sector. While recent calls to align Australian consumer engagement practices with those in the UK and elsewhere may sound progressive, doing so would be problematic for three reasons. First, Australia has been at the forefront of consumer leadership scholarship and advocacy for decades, and we should not ignore the work consumers and allies have done in improving our health systems. Second, although there have been positive outcomes from consumer engagement and inclusion practices (as often required in other jurisdictions), they are open to tokenism and continue to position consumers' experiential expertise as 'lesser' compared to other health sector stakeholders' knowledge. Last, compared to consumer leadership, engagement or inclusion are 'lower bars' for health professionals to aim for. If we settle for engagement or inclusion in cases where consumer leadership would have been possible, then we lose not only our position at the forefront of consumer leadership, but also the expertise of consumers. Three propositions are provided: (1) we should support consumer-led development policy for consumer leadership in health, (2) we should ensure consumer leadership in oversight over as well as conduct of health and medical research, (3) we should encourage honest claims about the extent to which projects or initiatives are led by or with consumers. Show more