Disability and access data to be recorded via NHI project

NEWS - eHealthNews.nz editor Rebecca McBeth 

Health New Zealand | Te Whatu Ora is developing a digital system that will 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.

"We have never as a system collected any kind of identifier within our health data that would say this person is disabled," says Leo Goldie-Anderson, chief advisor disability, Health NZ. 

"This means we essentially do not have disability data in the health system.” 

The NHI is a unique number assigned to everyone who uses health and disability services in New Zealand.

The new solution would create a digital interface where people can record their own access requirements.

"It could be things like "you have to send me a text message because I cannot answer the phone, I need a sign language interpreter, I need a quiet space to wait, or I need assistance to move around," Goldie-Anderson explains, adding that common accessibility barriers often prevent disabled people from accessing healthcare services.

Rachel Noble, head of disability, health, Health NZ, says that at the moment, the challenge of navigating the health system falls on disabled people themselves.

"PPNHI will give us not only visibility in being counted in the data, but what it also means is that our experiences with the health system should be more like everyone else's,” she tells eHealthNews.

Health NZ has completed two of four planned phases. The first was a technical proof of concept, while the second involved discovery and scoping work to finalise the approach to collecting both access profile information and administrative disability data.

The access profile questions have gone through initial testing with health system staff and community members.

For administrative data, the Health NZ team has worked with Statistics New Zealand, the Ministry of Health and Whaikaha to ensure an approach that meets best practice standards and various agency requirements.

"When we get this off the ground, it is going to become the only source of this kind of data in New Zealand," Goldie-Anderson says, in light of changes to the census from 2030.

People will not have to prove they are disabled to access the profile feature, which will be available to anyone who needs make access requests.

Noble says the project must work alongside a broader disability model of care.

"That is about building the capacity, adapting policies and processes and practices to ensure that the health services people are delivering will accommodate disabled people coming in,” she says.

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