Methodologies

Leads: Jodi Lamanna and Jackie Leach Scully (University of New South Wales)

Introduction
Fieldwork
Knowledge Exchange
Outputs
Collaboration and partnerships

Introduction

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. Our work aims to explore the pros and cons of the approaches currently used for studying the relationship between health and disability, with the ultimate aim of identifying those research methodologies that best enable people with disability to express, and researchers to capture, how disability affects health and vice versa, that are ethically endorsable, and that respect the rights and experiences of disabled people. 

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. 

Fieldwork

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.

The first online workshop, held in August 2026, had interactive components for participants to engage with. Workshop 1 was open to people with disability, families and carers, health professionals, researchers and any interested party. Due to the broad range of stakeholders, and as it was the first of the workshops, the questions asked of participants in the online session were broad and interactive. Although the numbers were small (about 15 participants) engagement was good and the data will add to the data that was gathered before the workshop through online anonymous surveys, and interviews.

Prior to the workshop, we conducted three interviews with people with disability to enable rich data around methods used to ask people with disability about their health priorities. We also interviewed one person as a carer of a person with disability. We also conducted online surveys with questions that reflected the interview questions for each cohort. Workshops 2 - 5 are being scheduled over the next two years. Workshops 2 - 4 will focus on researchers and then health professionals;  identifying best methods of asking people with disability about health priorities.  Workshop 5, likely to be in 2028, will be designed to consolidate a best practice portal around methods used to ask people with disability about the relationship between disability and health, and their health priorities.

Read more about the online workshops here.

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

Knowledge exchange

Our best practice portal will 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). 

Our Disability Matters Together: International Conference 2026 allowed the wider Disability Matters team to experiment with participatory and research methods as a means to bring together non/disabled university researchers and disabled people's organisations to critically reflect on all key phases of our programme health priorities, representations, methodology, environment and knowledge exchange: and will be reporting back on these over the coming months.

The UNSW and Sheffield teams of Disability Matters are currently working up a series of activities for February 2027 which will culminate in a Sydney Summer Institute: where we will explore research methods and their role in the development of disability studies.  

Outputs

Lamanna, J. (2024). Arriving Late: The lived experience of women receiving a late autism diagnosis. Jessica Kingsley Publishers.

Leach Scully, J. (2025).Disability and AI: Much more than assistive technologies.Science, 389, DOI:10.1126/science.aea4918

Professor Jackie Leach Scully presented Perspective shift: putting disability at the centre of health research 18th World Congress of Bioethics & Feminist Approaches to Bioethics Congress 2026, JOHANNESBURG • SOUTH AFRICA.

Collaboration and partnerships

[details to follow]