Disability status should be recorded in health data - HQSC

NEWS - eHealthNews.nz editor Rebecca McBeth 

A new report from the Health Quality & Safety Commission Te Tāhū Hauora finds that disability is “largely invisible” in national health data, meaning the system cannot easily identify, measure or address the health needs and inequities experienced by more than 850,000 disabled New Zealanders.

Disability advocates spoken to by eHealthNews support the HQSC’s call to accurately reflect disability in national health data, saying this will help ensure disabled people are visible in health planning, service design, quality improvement initiatives, and investment decisions.

The report, A Window on Disability, says key systems such as the National Minimum Dataset, the National Non-Admitted Patients Collection and the National Health Index (NHI) do not record disability status or the support a disabled person may need.

It recommends the health system “commit to, and fully resource, the mandatory inclusion of standardised disability identification questions across all existing and future health data collection processes”.

A significant gap
The HQSC describes the gap in disability data as so significant that Window on Disability was the hardest of all the reports it has compiled as part of this series yet.

Researchers instead used the Integrated Data Infrastructure (IDI), a system that links otherwise disconnected government datasets.

The data the Commission was able to gather shows that the rate of deaths from conditions that could have been prevented with timely health care is more than five times higher for disabled people than for non-disabled people.

Disabled people also present to emergency departments at almost three times the rate of non-disabled people, are hospitalised more frequently, and spend an average of nine days in hospital compared with two days for non-disabled people.

New Zealand Disability Support Network chief executive Debbie Hughes describes the absence of reliable disability data as a longstanding issue that disabled people and disability support providers encounter regularly.

"If disabled people are not identified within health data systems, they effectively become invisible to planners, policy makers, and service designers," Hughes says.

"This makes it difficult to understand whether disabled people are receiving equitable access to healthcare, where health disparities exist, and whether health outcomes are improving or worsening over time."

Standardising information
Hughes says that consistency in how disability is identified across the health system is critical, as “if different parts of the health system identify disability in different ways, the data cannot be effectively compared or used to inform decision-making”.

She says that disabled people and their representative organisations should be involved in designing how disability information is collected and used and that trust and transparency are essential.

Blind Low Vision NZ's Policy and Advocacy team says its own research using the IDI found that blindness and low vision were nearly invisible in health data and showed why standardised coding matters.

"As there was not a singular code for vision impairment, multiple disparate sources of information had to be used to piece together a mosaic of a population of people who are blind or low vision," the team says.

Blind Low Vision says that different data sources within the IDI use different coding for severe vision impairment and other vision conditions and the inconsistency creates significant practical barriers.

"As a charity with limited resources, it meant we were, and continue to be, limited by what research we can afford to do," the team says.

Disability and the NHI
eHealthNews reported in November last year that Health New Zealand was developing a digital system to allow disabled people to record their healthcare access requirements and enable the health system to collect disability data for the first time.

The Patient Profile National Health Index (PPNHI) project aims to address the lack of disability data in New Zealand's health system and the need for healthcare providers to understand people’s access needs before appointments.

Rachel Noble, Health NZ head of disability says the organisation acknowledges the issues raised in the report and says improving disability data is a key activity under the New Zealand Disability Strategy

“We recognise the experience some disabled people have had with Health NZ has not been positive or led to good health outcomes,” she says.

“We take this seriously and have work underway to improve the experiences of disabled people in the health system. These include actions arising from the New Zealand Health Plan and the New Zealand Disability Strategy 2026–2030.

“We remain committed to working with the disability community, sector partners including Disability Support Services, and the Health and Disability Commission and the Health Quality & Safety Commission to strengthen our system so we provide safe, respectful, and accessible care.”

A personal experience
Jacinta Tevaga, a Samoan researcher focused on disabled person-led monitoring of the United Nations Convention on the Rights of Persons with Disabilities, tells her story in the HQSC report.

She says that despite being blind, nothing in her hospital notes flagged her vision impairment during a surgical admission, leaving her to repeatedly explain her disability to every new staff member.

Two years after surgery, she discovered by chance during a routine GP visit that surgeons had found endometriosis during her operation and no one had told her.

"Through all of this, I learned how heavy the burden is on disabled people to carry information between services," Tevaga says.

"The systems do not talk to each other, so we are forced to act as our own messengers, even when we are sick and overwhelmed."

"What the health system needs is simple, but essential. Disabled people deserve to be listened to. We need staff who are trained in disability awareness - not just nurses, but health care assistants, doctors, everyone."

The 2023 Household Disability Survey estimates that 17 percent of New Zealanders, approximately 851,000 people, are disabled.

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