Accessibility remains an afterthought – how NZ’s digital health tools risk excluding people with disabilities

Alongside my career path from a PhD in computer science, work as a nurse and ambulance officer and now a university lecturer in nursing, I have become progressively deafblind.

As a result, I have personal experience navigating New Zealand’s health system, both as an employee and patient living with dual sensory loss.

My experiences provide me with a unique perspective on how important it is to integrate technology well into healthcare practices. Currently, accessibility is often lacking or insufficient, both for staff and patients.

My work focuses on bridging the gap between technology and nursing to make digital health accessible. A broader review of existing research confirms this need: accessibility is often an afterthought in software development, and digital health solutions are designed in a way that makes them inaccessible.

Accessibility must be part of early software design

One in four New Zealanders lives with a disability. Despite this significant portion of the population, digital solutions often overlook their needs.

For example, the YourRide taxi booking app’s launch last year has created difficulties for total mobility scheme card holders, with some struggling to access their taxi service equitably. With 89,000 individuals relying on the scheme in 2022, it is essential that they have equity in access to taxi transportation.

The app does not cater for total mobility card holders and a national taxi company is making them call by phone to confirm their status. This is further complicated by a malfunctioning text-as-taxi-approaches system, leaving those without app access no way of knowing how far away the taxi is without phoning the company.

This system has led to delays, multiple phone calls and missed appointments. Had the app been designed with total mobility card holders from the beginning, these issues could have been avoided.

The lack of emphasis on accessibility often begins at the early stages of software development, which leads to inaccessible digital health solutions.

While major companies like Apple and Microsoft have proprietary accessibility libraries, their usage is not widespread and considerably variable. Some accessibility test tools exist for web-based applications, but their implementation varies. And not all digital health solutions are web-based and guidelines for native applications are scarce.

Read more: Australia is lagging when it comes to employing people with disability – quotas for disability services could be a start

It is important to integrate accessibility in the design phase of any project. One of the recommendations of a Digital Health Leadership Summit held in 2023 was that New Zealand should adopt a national strategy for accessibility in digital health, moving away from the fragmented approach.

Community engagement and collaboration are crucial to informing design in digital health and enhancing data collection and analysis. Projects such as Hira, which put in place the foundations for initiatives such as My Health Record, foster inclusivity, user-centred design, legislative compliance and equitable resource access.

Considering accessibility in the design phase and upholding ethical standards in digital health is essential. Flexible and adaptable solutions that cater to diverse access needs are necessary, along with clear information, navigation and personalisation to meet the specific requirements of individuals with disabilities.

Read more: Treatments tailored to you: how AI will change NZ healthcare, and what we have to get right first

Gaps between recommendations and reality

Unlike some other countries, New Zealand does not have legislation explicitly addressing or policing accessibility.

In 2022, the United Nations examined New Zealand’s performance under the Convention on the Rights of Persons with Disabilities and highlighted:

… a lack of recognition, across all government portfolio areas, that disability is a whole-of-government responsibility.

The UN also stressed that legislative and policy frameworks on disability should align with the Treaty of Waitangi to ensure active involvement in decision making and consultation with Māori with disabilities. It recommended a national strategy to increase awareness and promote respect for the rights and dignity of people with disabilities.

The discrepancy between recommendations and reality may be related to employment. Only 44% of people with disabilities are employed, compared with 69% of those without disabilities. This disparity in employment rates suggests a need for greater inclusivity and support for individuals with disabilities in the workforce.

Perceptions of disability

In healthcare, staff with access needs appear to be undeserved.

My first experience of this was when I worked as a nurse. I had disclosed my disability and was using a magnifying glass to check drug vials when giving medications. I had made no errors.

But the charge nurse nevertheless told me she no longer wanted me to use a magnifying glass as it decreased the public’s trust. If I had been quicker off the mark, I could have asked how a magnifying glass differs from reading glasses.

Her attitude raises important considerations regarding the perception of disability within healthcare environments. Her request to restrict the use of a tool that allowed error-free medication checks highlights a potential lack of understanding or sensitivity towards the needs of individuals with disabilities.

Last year, a German survey using sign language found that a lack of understanding of disability needs meant that deaf people were choosing not to engage with the healthcare system.

A similar survey in New Zealand could provide valuable insights into the barriers deaf people face. It could compare the effectiveness of digital versus face-to-face consultations and exploring the use of digital solutions such as closed captions in tele-health consultations.

Lingering undercurrents of discrimination

The historical treatment of individuals with disabilities within pākehā society was marked by a pervasive view of disability as a deficiency.

Rooted in the medical model of health which historically focused on deficits and impairments, the prevailing attitudes towards disability have often been shaped by societal norms that prioritise able-bodiedness. This has led to the marginalisation and stigmatisation of individuals with disabilities, who were seen as a deviation from the norm.

The legacy of these historical perceptions continues to linger. Despite advancements in understanding and awareness, an undercurrent of discrimination and exclusion prevails. This is reflected in the limited access to resources, opportunities and support systems available to individuals with disabilities.

People with disabilities have a long history of distrust in the health and disability systems in New Zealand. Improving education and training, building trust and promoting effective data sharing are essential for enhancing their care and experiences.

My goal is to advocate for this change. I want to ensure that digital health tools are designed with an equity lens, where disability, just like culture and gender, is given due consideration. This isn’t just about technology. It’s about reshaping our society’s approach to health, disability and inclusivity.