Lived Expertise and the Development of a Framework for Tracking the Social Determinants, Health, and Wellbeing of Australians with Disability

Abstract

There is increasing recognition of the value of coproduction and inclusion of people with disability in research, and a growing literature on inclusive methods, particularly involving people with intellectual disability. This article critically examines the ways leadership by, and collaboration and consultation with, people with disability informed the development of a framework to monitor Australia’s progress on reducing inequalities in the social determinants of health and wellbeing for people with disability. It focuses especially on the contribution of an expert panel of advice comprising people who live with disability. Input from the expert panel resulted in changes to the language, shape, and detail of the framework and highlighted the complexity easily hidden when people’s lives and experiences are measured and quantified. The article provides a practical illustration of the value of lived expertise and challenges universities and researchers to work harder to ensure people with disability shape the research agenda.

Keywords

• inclusive research
• co-production
• social determinants
• disability
• health
• wellbeing