Have people with disability been asked about their health priorities?

To cite this work: Lamanna J. and Jackie Leach Scully (2025). Have people with disability been asked about their health priorities?  Disability Dialogues. Sheffield: iHuman, University of Sheffield. 

Jodi Lamanna is a researcher who lives and works on unceded Dharawal Country in Australia. Jodi’s work spans the fields of disability, education, gifted education, equity in higher education, and career development learning (CDL). Jodi has also worked with Disability Peoples Organisations (DPOs) and is familiar with systemic advocacy and policy. Some of Jodi’s publications can be found through Orcid.

Jackie Leach Scully is Professor of Bioethics, and Director of the Disability Innovation Institute at the University of New South Wales, Australia. Much of her research as a bioethicist has combined empirical and normative approaches, leading to an interest in bioethical methodologies. She has worked in the UK and Switzerland, and is now based in Australia, where she is a member of the Australian Health Ethics Committee, the Embryo Research Licensing Committee, and the National Disability Research Partnership. She has been deaf since childhood and lives with a chronic health condition.

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. Although the research is still in the early stages, the team is currently partway through a scoping literature review investigating the research methods used to ask people with disability about their health priorities in Australia. 

We decided to look for research publications that had been published between 2015 and 2025 and that had used keyword combinations including research method, disability, health priorities, and Australia. The preliminary findings from the reviewed literature show that there is almost no research conducted that specifically asks people with disability about their health priorities. Of course, people with disability have been engaged in participatory approaches and other methods in research that address health priorities. The areas being investigated included providing feedback on assistive technology, co-designing telepractice, early childhood support for children with disability, rehabilitation priorities, and deciding on research priorities – occasionally including health priorities. However, these health priorities were largely researcher-led – that is, the topics were determined by the researchers, many of whom were not disabled, and therefore may not reflect the health priorities of people who live with disability.

If people with disability are not directly asked about their health priorities, what does this say about us as a society, and our societal attitudes towards people with disability? Are we saying that people with disability are not interested in their own health? Or that people with disability do not have the capacity to contribute to discussions about health? Or that people with disability do not have opinions about their own health? When we, as researchers, and as the broader society do not purposefully include people with disability in matters that are important to them, we violate human rights. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2006), of which Australia is a signatory, highlights the importance of participation and inclusion for people with disability, along with individual autonomy. Participation and inclusion needs to be informed by people with disability in order to uphold their human rights.

Over the length of Disability Matters as a whole and for our project in particular, there will be multiple opportunities for people with disability to share their viewpoints on their health and health priorities, particularly how they would like that research to be done – how they would like to be asked about their health priorities. Opportunities for input include through online methodology workshops and individual consultations. By using inclusive research methods we show that we respect the human rights of people with disability. Also, because we are sensitive to the existing systemic issues, we hope to turn our findings into recommendations about mitigating those issues, and 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).

If you have any thoughts, comments, or just want to know more about our work, please contact Jodi Lamanna via email at j.lamanna@unsw.edu.au

References

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

United Nations. (2006). Convention on the Rights of Persons with Disabilities. Accessed 29/7/2025, https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd