The Ministry of Health has developed a strategy and two-year action plan to improve the way health data is collected, managed, shared and used, says Ministry of Health Deputy Director-General Data and Digital, Shayne Hunter.

“At the moment the health and disability system collects a lot of data but needs to be more effective at connecting this with other data and using insights to provide the best possible health care or to ensure the system is equitable, sustainable and performing well.  Data is often duplicated, it’s not always digitised which makes it harder to access, and there are variations in the way information is recorded.”

The Ministry has published a Data and Information Strategy for Health and Disability (https://www.health.govt.nz/publication/data-and-information-strategy-health-and-disability-he-rautaki-raraunga-he-rautaki-parongo-mo-te) and an accompanying Roadmap outlining a set of actions across five priority areas (https://www.health.govt.nz/publication/data-and-information-strategy-health-and-disability-roadmap-2021-2024).

The Strategy supports the health and disability system reforms underway, with an emphasis on engaging with people about the collection and use of their personal health data, ensuring quality, accessible data, support a more cohesive system, and in the development of digital health services that are accessible and closer to home.

“There are really important questions to be answered about how data is governed and what the rights, roles and responsibilities are around data and even what we consider to be data given advances in technology. This is also important to ensuring peoples’ trust in the health and disability system as custodians of their personal information,” says Shayne Hunter.

“This Strategy and Roadmap describe the work that needs to be done over the next couple of years so New Zealanders are clear about what happens to the information they share with health and other providers.”

Actions include:

• developing a national health and disability data catalogue and dictionary,
• developing equity measures for data standards,
• creating ways for people to authorise others to access their health information, eg, support people and whānau,
• improving data literacy and capabilities in the health and disability workforce,
• establishing national and local health data governance councils, to partner with Māori and consumers, and to be representative of local communities,
• developing a health data sharing and accessibility framework.

Shayne Hunter says the Ministry will work with sector leaders and others to deliver the Roadmap.

“There’s a lot of support for improving the way we manage, share and use data. As a sector we began taking stock of what’s working well and where we need to improve prior to the health reforms but the transition to a new operating model for health and disability provides opportunities to really accelerate that work.”

“It’s also important to look beyond the health and disability system, as so many other things have an impact on people’s health and wellbeing. We need a whole-of-system approach to health data and information, which involves working more effectively with other agencies which are using health data to address issues such as access and equity.”

Differences in health outcomes for Māori, Pacific peoples and disabled people in particular are both long-standing and well-documented. Inequities in health outcomes are driven by socio-economic factors outside of health, but also by access to services and treatment within the health and disability system. There is a role for better access to and use of data and information to assist with the goal of achieving equity.

“We’ve also learnt a lot from the way we’ve been able to use near real-time data and analytics in the COVID-19 response; data has been essential to the effectiveness of New Zealand’s pandemic response and we want to build on that to ensure data and information flow to the right parts of the health and disability system.

“It’s about harnessing the power of data to provide all New Zealanders with the best possible health care, and about working respectfully and effectively with data that people have entrusted to the health and disability system.”

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