Dismantling barriers to research and clinical care for individuals with a vision impairment

Abstract

In Australia, little prevalence data around vision impairment exist. However, self-reported data from the Australian Bureau of Statistics 2017–18 National Health Survey¹ suggest that around 800 000 people have a vision impairment or are blind (excluding uncorrected refractive errors).² The leading cause of vision impairment in working-age adults are inherited retinal diseases (IRDs)³ — a group of genetic conditions that primarily affect the retina. Other than one particular gene therapy for biallelic RPE65-associated retinal dystrophy, there are no other clinically available treatments to safely prevent vision loss or restore vision for someone with an IRD.⁴

With no universally accepted definition of vision impairment,⁵ we use “vision impairment” in this article to refer to a significant reduction in vision that causes individuals to rely on visual substitution skills for daily living.⁶ Understanding the perspectives of individuals who have a vision impairment is necessary to develop meaningful interventions, policies and practices. However, too often these individuals have limited access to research opportunities and health information due to the inaccessibility of information.^7-9 Resources, such as the Web content accessibility guidelines, provide useful guidance for how to make digital information more accessible.^{10, 11} However, a lack of awareness and integration of these guidelines across national policy and professional code results in little uptake. Challenges around feasibility and capacity also arise for researchers and clinicians when embedding such practices.

In 2023–2024, we undertook a James Lind Alliance Priority Setting Partnership (PSP) to identify the top research priorities for IRDs in Australia, from the perspectives of individuals with lived experience and health professionals.^{12, 13} As a first step of the PSP, we established a 14-member steering group consisting of people with lived experience (individuals with an IRD or other vision impairment, and caregivers), community organisations representatives, health professionals (clinical geneticists, ophthalmologists, speech pathologist, optometrist), and researchers. The steering group met ten times over 18 months to guide the PSP, which included two national surveys and online workshops with the IRD community.¹²

Here, we share our learnings from undertaking the PSP surveys and hosting an in-person educational event for the IRD community. This article has been co-written with our PSP steering group, including seven co-authors who have lived experience of vision impairment. By providing these co-developed recommendations, summarised in the Box, 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.

Accessibility is an ongoing commitment that will continue to change based on the needs and experiences of the community. Here, we share our current recommendations for more equitable access to research and clinical information for individuals who have a 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.

Open access publishing facilitated by University of New South Wales, as part of the Wiley – University of New South Wales agreement via the Council of Australian University Librarians.

No relevant disclosures.

Not commissioned; externally peer reviewed.