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

Area of Science:

• Health Policy
• Consumer Engagement
• Health Services Research

Background:

• Growing emphasis on consumer representation in health policy and services.
• Critiques highlight how representativeness discourses can disempower consumers.
• Consumer engagement in COVID-19 triage policy development is often an afterthought.

Purpose of the Study:

• To evaluate the development of COVID-19 triage principles in the Australian Capital Territory.
• To explore stakeholder understandings of consumer representativeness in health policy.
• To analyze how power imbalances are reproduced or challenged through consumer representation.

Main Methods:

• Discursive psychological analysis of stakeholder interviews.
• Focus on consumer, carer, and community group engagement.
• Evaluation of COVID-19 triage principle development.

Main Results:

• Two ways participants discussed consumer representativeness: as lay public vs. diverse/intersectional identities.
• Expectations of representing the general population can silence lived experience.
• Traditional power imbalances may be reproduced by current representativeness models.

Conclusions:

• Rethinking representativeness to include diverse, intersectionally marginalized consumers can challenge power imbalances.
• Health services should actively seek diverse consumer voices.
• Empowering consumers requires valuing lived experience expertise in policy development.