From a Single Voice to Diversity: Reframing ‘Representation’ in Patient Engagement

Abstract

There has been a growing emphasis on consumer representation in the development of health policy, services, research, and education. Existing literature has critiqued how discourses of representativeness can disempower consumers working in health systems. The context of the current study is consumer engagement in the development of COVID-19 triage policy and practice in a local health service. Consumer engagement has often been an afterthought in the COVID response, with few examples of consumers in agenda-setting or decision-making roles. In the Australian Capital Territory, 26 consumer, carer, and community groups worked together with academics and clinicians to develop these principles. Interviews were conducted with stakeholders (including consumers, clinicians, and other health professionals) to evaluate the development of triage principles. A discursive psychological approach to analysis was used to explore participants’ understandings about and constructions of consumers being representative (or not) and how this may reproduce power imbalances against consumers. The results explore two distinct ways in which participants talked about consumer representativeness: the first drawing on rhetoric about consumers as lay members of the public (as distinct from being professionally engaged in the health sector), and the second in terms of consumer representatives being diverse and having intersectional identities and experiences. Expectations about consumers to be representative of the general population may reproduce traditional power imbalances and silence lived experience expertise. These power imbalances may be challenged by a shift in the way representativeness is conceptualised to requiring health services to seek out diverse and intersectionally marginalised consumers.