Methodologies

Leads: Jodi Lamanna and Jackie Leach Scully (UNSW)

As part of the international Disability Matters project the team at the Disability Innovation Institute UNSW Australia are investigating the methods that are used to ask people with disability about their health, with the aim of identifying the most appropriate and informative method(s) for various circumstances. 

Preliminary findings from the reviewed literature show that there is almost no research conducted that specifically and directly asks people with disability about their health issues and priorities. Although people with disability have been engaged in participatory approaches and other methods in research that address health priorities, many of these are researcher-led – that is, the topics were determined at the outset by the researchers and therefore may not reflect the health priorities of people who live with disability. 

Over the length of Disability Matters project, there will be multiple opportunities for people with disability to share their viewpoints on their health and health priorities, and particularly how that research should be done – how they would like to be asked about their health priorities. Opportunities for input include online methodology workshops and individual consultations. The online methodology workshops will feed into the facilitation of a crowd-sourced best practice portal that brings together global testimonies, stories, and resources of participatory and inclusive research.

We hope to turn our findings into recommendations and to produce ideas about how to improve healthcare research from a disability perspective. These findings will be shared in multiple ways so that they are as accessible as possible to everyone (CAST, 2024).

References
CAST, (2024). The UDL Guidelines. Accessed 4/8/2025, https://udlguidelines.cast.org/