New Zealand's Ministry of Health plans to build national datasets on rare disorders as part of its strategy to better support people living with such conditions.

The recently released Aotearoa New Zealand Rare Disorders Strategy sets out the health system's direction to improve the health outcomes and quality of life of people living with rare disorders and their families over the next 10 years.

WHAT IT'S ABOUT

A priority of this strategy is the collection of information on rare disorders, which over time will be made available to stakeholders.

The Ministry of Health intends to make clinical classifications more detailed and make classification systems connect easily to supplementary data sets on rare disorders. 

It also looks to develop ways of capturing data on suspected but unknown rare disorders. Methods will also be developed to connect high-quality rare disorder information with national health data. 

In the coming years, it is expected that de-identified data will be utilised in research that seeks ways to improve outcomes and support for people with rare disorders. 

WHY IT MATTERS

Rare disorders in the New Zealand context are conditions that affect one in 2,000 people. These include rare cases of genetic disorders, cancers, infectious disorders, poisonings, immune-related disorders, and idiopathic disorders. Ultra-rare disorders, meanwhile, affect one in 50,000 people. 

"At present, we collect little information on rare disorders systematically. With limited data, we don’t know precisely how many New Zealanders live with rare disorders, what the health impacts are, and how many receive timely diagnosis and care," the Ministry of Health said. 

There are probably some 300,000 people living with rare disorders in the country. The Ministry of Health's 10-year strategy seeks to address the health system's challenges in identifying and responding to these cases and meeting patients' "uncommon, unusual, or unclear" needs.

"In the future, services will use rare disorder information to guide, monitor and improve care for patients," the Ministry of Health noted. It said having access to information on rare disorders will support care planning and provision. Regular reporting and monitoring of information on rare disorders will also "enable better and more timely care and choices" for particular groups of patients. 

THE LARGER TREND

The Aotearoa New Zealand Rare Disorders Strategy aligns with the New Zealand Health Strategy, released last year, which also emphasises building robust data and data collection. It underscores the importance of high-quality data in monitoring trends and outcomes, as well as identifying gaps in research and innovation. "We must have unified and trusted data gathering systems that are accessible to all, where privacy and security are paramount." 

Besides data collection, New Zealand is also enhancing health data sharing by coming up with the NZ Core Data for Interoperability, which will serve as the standard for the most commonly shared health data in clinical workflows and consumer access to data.