Source: Health Quality and Safety Commission Te Tāhū Hauora
A significant gap in New Zealand’s health data is making widespread inequities for disabled people invisible, according to a new report released Friday June 5 by the Health Quality and Safety Commission Te Tāhū Hauora (the Commission).
According to the 2023 Household Disability Survey, disabled people make up around one in six New Zealanders.
A Window on Disability report finds that disability is largely invisible in national health data, meaning the health system has limited ability to identify, measure or address the health needs and inequities experienced by more than 850,000 disabled New Zealanders.
For example, while everyone who uses the health system is assigned a National Health Index (NHI) number, the NHI record does not capture whether a person is disabled or what support they may need.
Despite these limitations, the report uses new data analysis techniques to connect existing datasets and, for the first time, build a national picture of disabled people’s experiences of health care quality and safety.
What emerges is a clear pattern of systemic barriers and poorer health outcomes across the lifetimes of disabled people. These include:
- maternity care: disabled people are less likely to enrol with a lead maternity carer and have higher rates of pre-term birth
- children and youth: services are generally responsive in early years, but the transition to adult care is a significant pressure point where connections between services begin to fragment and disparities in health outcomes between disabled and non-disabled people widen
- adults: disabled people face barriers to accessing primary care, contributing to higher emergency department use and increased rates of cancer, diabetes, post-operative complications, poor oral health, and mental health conditions
- older adults: a growing group of people with age-related disabilities is emerging, but their needs are not well distinguished in current data.
The compounding impacts throughout disabled people’s lifetimes build and result in the Window’s stark finding that disabled people die from treatable conditions at five times the rate of non-disabled people. This rises to 10 times for Māori disabled people.
Professor Sunny Collings, Chief Executive of the Commission, says the findings highlight both the impact of inequities and the risks of data gaps on disabled people’s health outcomes.
“Disabled people have long reported barriers in the health system, but until now, those experiences haven’t been visible in national level data.
“A Window on Disability shows what becomes possible when we start to connect the data, but also how much is still missing”.
Improving disability data collection is critical. The report identified a good first step is to commit to, and fully resource, the mandatory inclusion of standardised disability identification questions across all existing and future health data collection processes.
Professor Collings says “reliable, good quality data is essential to understanding where in the health system we need to focus our efforts to improve health outcomes for disabled people”.
Access A Window on Disability report on the Health Quality & Safety Commission website, from Friday 5 June: http://hqsc.govt.nz/a-window-on-disability
A Window on Disability is released on the same day as the Health and Disability Commissioner’s report ‘Disabled people’s | Tangata whaikaha experiences of health services’ which states that about 25 percent of complaints it receives are about care provided to disabled people.
Background
A Window on Disability was developed in a partnership between the Health Quality & Safety Commission Te Tāhū Hauora, researchers from the Donald Beasley Institute, and data analytics group Nicholson Consulting.
The Window combines disabled-led research and disability community engagement with advanced Integrated Data Infrastructure (IDI) data analytics.
The Integrated Data Infrastructure (IDI) is a large research database managed by Statistics NZ. It holds de-identified microdata about people and households that comes from government agencies, Statistics NZ surveys, and non-government organisations (NGOs).