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People with vision impairment face unique barriers when it comes to participating in clinical research and accessing health information.
Around 800 000 Australians are living with some form of vision impairment, with inherited retinal diseases (IRDs) being the leading cause in working-age adults.
Including lived experience in health research is crucial for ensuring that health care meets the needs of the individuals requiring care, but people with vision impairment face significant barriers to accessing health information.
In a perspective published in the Medical Journal of Australia, Dr Eden Robertson from the University of New South Wales and co-authors have outlined practical recommendations for better inclusion of people with vision impairment in research and clinical care.
“Understanding the perspectives of individuals who have a vision impairment is necessary to develop meaningful interventions, policies and practices,” Dr Robertson and co-authors wrote.
“However, too often these individuals have limited access to research opportunities and health information due to the inaccessibility of information.”
The recommendations
The authors undertook a James Lind Alliance Priority Setting Partnership (PSP) to identify the top research priorities for people with vision impairment in Australia, drawing on perspectives from health professionals and individuals with lived experience.
“Our research practices veered away from the medical model of disability toward a social model, ensuring that individuals with lived experience were equal partners with the researchers,” the authors wrote.
“By providing these co-developed recommendations … our aim is to provide feasible strategies for researchers and clinicians to undertake more accessible research and better facilitate information access for individuals with a vision impairment.”
The recommendations include:
- building meaningful connections with community organisations and individuals who have lived experience through steering committees and partnerships;
- shifting the focus to people-first language and a social model of disability, and ensure individuals with lived experience are equal partners in the research team;
- implementing strategies to ensure that all individuals can fully participate by providing relevant accessibility supports as requested by participants;
- moving away from the default methods of information provision and ensure information is delivered in accessible mediums (eg, ensure information is compatible with screen readers, include alt text with visuals and avoid unnecessary visuals and infographics); and
- adapting data collection methods to provide alternative formats as requested by individuals with lived experience (eg, collecting information on paper using braille or verbally via phone call).
Committing to accessibility
Despite existing guidelines designed to make digital information more accessible, there is a lack of awareness or integration of these guidelines in national policy or professional codes.
The authors note that providing accessibility requires an ongoing commitment to listen to the needs and experiences of the community, to ensure access to clinical information and research is equitable for individuals with vision impairment.
“We strongly suggest that researchers and clinicians weigh up the potential value and impact of incorporating these recommendations with the social and ethical cost of forgoing them,” the authors conclude.
Read the perspective in the Medical Journal of Australia.
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