New Zealand considers routine collection of data on rare diseases
The New Zealand Ministry of Health plans to create national datasets on rare conditions as part of a strategy to better support people with such conditions.
The recently published Aotearoa New Zealand Rare Disorders Strategy sets out the direction the health system needs to take over the next 10 years to improve health outcomes and quality of life for people with rare disorders and their families.
WHAT MATTERS
A priority of this strategy is to collect information on rare diseases. This information will be made available to stakeholders over time.
The Ministry of Health wants to make clinical classifications more detailed and ensure that classification systems can be easily linked to additional datasets on rare diseases.
It also aims to develop ways to collect data on suspected but unknown rare diseases. Methods will also be developed to connect high-quality information on rare diseases with national health data.
It is expected that in the coming years, anonymized data will be used in research into ways to improve outcomes and better support people with rare diseases.
WHY IT MATTERS
Rare conditions in the New Zealand context are conditions that affect one in 2,000 people. These include rare cases of genetic disorders, cancers, infectious diseases, poisonings, immune-related disorders and idiopathic conditions. Ultra-rare conditions, on the other hand, affect one in 50,000 people.
“Currently, we systematically collect very little information about rare conditions. With limited data, we do not know exactly how many New Zealanders are living with rare conditions, what the health impact is, and how many people receive timely diagnosis and care,” the Ministry of Health said.
There are likely to be around 300,000 people living with rare diseases in the country. The Ministry of Health’s 10-year strategy seeks to address the challenges facing the health system in identifying and responding to these cases and meeting the “unusual, unusual or unclear” needs of patients.
“In the future, services will use information on rare diseases to guide, monitor and improve patient care,” the Ministry of Health noted. It said access to information on rare diseases will support care planning and delivery. Regular reporting and monitoring of information on rare diseases will also “enable better and more timely care and choices” for certain groups of patients.
THE BIGGER TREND
The Aotearoa New Zealand Rare Disorders Strategy follows on from the New Zealand Health Strategy, released last year, which also places emphasis on building robust data and data collection. It emphasises the importance of high-quality data in monitoring trends and outcomes, and identifying gaps in research and innovation. “We need to have uniform and trusted data collection systems that are accessible to all, with privacy and security paramount.”
In addition to data collection, New Zealand is also improving health data sharing by introducing 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.