New Zealand already has many national datasets containing health information.
- National Minimum Dataset (hospital discharge information)
- National Maternity Collection
- Mortality Collection
- NZ Cancer Registry
- National Immunisation Register
- primary care enrolment data.
These datasets are brought together in different ways and at different times to help with planning, commissioning of services and policy development across the health system.
However, some primary care data is not included alongside these datasets at a national level, making it difficult to plan and invest in health service improvement.
Fuller information for planning, funding, service delivery
Having a view of key primary health data nationally, combined with national data collections, will give us valuable information to use when we plan, fund, and deliver health care services for New Zealanders.
For example, by understanding how many New Zealanders in different areas have type two diabetes or are at risk of developing type two diabetes, we can provide additional support and investment where it is needed.
We can also understand more clearly which population groups are most at risk of not receiving the health care they need.
Currently, we do not have the joined-up data to be able to do this, which impacts on the health system’s ability to offer equitable access to services.
Over many years the primary health care sector has worked hard to develop data sets for use in their local areas. With national datasets, they will be able to see information related to their own area as well as similar information for other areas.
Information held by the Ministry of Health will be able to be joined with local information for more comprehensive population-level analysis as well.
We are looking for support from the sector and to take a partnership approach in developing the best set of information to improve the health of New Zealanders. This project has been talked about for many years and has been widely accepted as very important for the health sector.
The reformed health system gives us the opportunity to have a unified view of health data to improve health outcomes for people. There is strong support from the wider leadership of Te Whatu Ora - Health New Zealand, the Māori Health Authority, and the Ministry of Health to partner with the primary care sector to provide world-leading national primary health datasets.
Primary care data needed
The primary care data needed will include:
- Primary care diagnosis – the list of problems or conditions a patient has or has had
- Laboratory results – the results of laboratory and other diagnostic tests
- Encounters – the reason a person visited their general practitioner (GP) and the type of visit (telehealth, phone, in person)
- Immunisations – these are jointly held by general practice and the national immunisation register
- Medications – community-based prescribing and dispensing is only partly available nationally and not all general practices use the electronic prescribing platform Key measurements.
We're planning to work with the sector to out together the relevant data and combine this with existing data for analytical use by early 2023.
Richer data and knowledge is critical if we are to provide health services that work for all New
Better data and knowledge about Māori health and wellbeing will support our obligations as Treaty
partners. It will provide further evidence and understanding about how the primary and community
care system and services are supporting Māori.
Developing the data sets
The Primary Health Dataset Programme team will work in partnership with general practice, community health care providers and primary health organisations (PHOs) throughout the development of the enhanced datasets.
A governance group with sector membership is providing strategic advice and direction to the programme.
Core enhanced primary health data will be made available first, with additional data added later. This core data will be accessible early on to support localities commissioning, public health surveillance, innovation and COVID-19 in the Community, as well as local programmes being delivered by primary and community care.
Timeframes and milestones
Priorities for the next six months include:
- working with primary care to understand the data currently collected
- defining what primary care data sets would contain
- developing a process for bringing the data together
- developing and working on baseline analytical tools for appropriate access, in line with best practice privacy protocols.
May 2022 to December 2022
- Define the data governance framework, including Te Tiriti o Waitangi principles.
- Work with primary care to understand what data is currently collected (current state analysis).
- Develop a summary of the type of primary care data held and where/how it is held.
- Define what primary health data sets would contain.
- Define the technology architecture of the enhanced data sets, including how the work aligns to the Hira Programme architecture.
- Develop a process for bringing the data together and curating it.
- Develop a definition of the services (such as analytics) that will be delivered as part of the data programme.
Develop options for who could support this work, with the potential for procurement if required.
- Assemble the data.
- Perform sample analytics and test assumptions around the data.
- Offer analytical tools to the sector.
- Relevant primary care data, combined with data already held, is available for analytical use.
What happens now – in New Zealand and internationally
In New Zealand, data is currently collected by general practices, community health providers, and PHOs for distinct reasons. For example, a general practice will hold information about a person to care for them, a PHO will hold aggregate data for planning or support of health services.
Some primary care data is not included alongside the data held at a national level, making it difficult to plan and invest in health service improvement. Internationally, a number of different approaches are taken, to reflect different types of health systems. Some health systems are nationalised (like the UK) and others have mainly private systems.
New Zealand has a mix of directly government-funded services, and providers who are independent of government, such as general practice. In most Western health systems there is a move to working more closely with primary and community care organisations to take a greater population health approach to planning and service delivery. Scotland and Australia, for example, both have an active primary health data focus.
Privacy and security of data a top priority
An essential part of the project is ensuring consumers rights and privacy are protected and the person is informed of how their information will be used. A full privacy impact assessment will be undertaken, including working with the Privacy Commission.
The data will be used for population health analytics and no person will be individually identified in any outputs from the datasets. Māori data sovereignty will be observed.
There will be some set-up and on-going costs and some funding has been set aside for this. The
development of a data analytics platform accessible to key stakeholders will be part of the
programme. We are also looking at making reporting/analysis tools available to sector stakeholders
at low cost.
Links with the Hira Programme
In future, Hira may replace some of the data sources stood up for the Primary Health Dataset Programme and it also may give people the opportunity to add more information to the overall data held nationally.
Hira will support a new way of accessing and sharing people’s health information. It will be the connector of health and disability data. Hira will enable consumers to view their health record and interact with their health providers
digitally. The Primary Health Dataset Programme team and the Hira Programme team are working together.
Procurement for the design and build of the datasets
Procurement of primary health data expertise and capability is one of the options being considered.
The team is planning to engage with the primary care vendor community when our requirements are
Get in touch
We'd love to get you feedback on the programme, including ideas, concerns, and previous experience.
Email us at email@example.com.