Primary Health Dataset Programme

New Zealand already has many national datasets containing health information.

These include:

• National Minimum Dataset (hospital discharge information)
• National Maternity Collection
• Mortality Collection
• NZ (New Zealand) 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.

Having a view of key data sourced from primary health care, 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. Assembling this type of information with datasets already held nationally, all of the health sector will be able to see information related to their own area as well as similar information for other areas.

Information held by Te Whatu Ora, Te Aka Whai Ora and Manatū Hauora will be able to be joined with local information for more comprehensive population-level analysis as well.

We are working in partnership with the primary care sector, particularly general practice, and Primary Health Organisations (PHOs) in the development of 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, Te Aka Whai Ora and Manatū Hauora to partner with the primary care sector to provide world-leading national primary health datasets.

The primary care data needed will include:

1.  Problems/Conditions
2. Medications
3. Immunisations
4. Smoking status
5. Measurements and vital signs
6. Diagnostic results – laboratory
7. Encounters
8. Vaping
9. Care Plan
10. Referrals
11. Procedures
12. Pregnancy
13. Functional status
14. Patient Demographics

We are working with the sector to put together the relevant data and combine this with existing data for analytical use in 2024.

Richer data and knowledge is critical if we are to provide health services that work for all New Zealanders.

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.

The Primary Health Dataset Programme (PHDP) team will work in partnership with general practice, community health care providers and PHOs throughout the development of the enhanced datasets.

A governance group with sector membership is providing strategic advice and direction to the programme.

Data sourced from primary care and the national collections will be made available, possibly in stages. 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.

Find out more about our Governance Group

April 2022 to September 2022

• Engaged primary care to support the development of a primary care dataset.
• Worked with primary care to understand what data is currently collected.
• Developed a summary of the type of primary care data held and where/how it is held: see PHDP current state analysis report
• Provided a set of recommendations on how the programme could proceed: see Memo on PHDP recommendations.

October 2022 to June 2023

• Defined the data governance framework, including Te Tiriti o Waitangi principles.
• Specified what primary health data sets would contain.
• Defined the technology platform requirements of the enhanced data sets, including how the work aligns to the Hira Programme architecture.
• Reviewed the services (such as analytics) that will be delivered as part of the data programme.
• Identified options for who could support this work, with the potential for procurement if required.
• Perform sample analytics and test assumptions around the data.
• Offer analytical tools to the sector.

We have worked in partnership with the sector on a current state analysis and key recommendations.

This current state analysis report analysed and documented the current data management approaches of Primary Health Organisations (PHOs) to support the Primary Health Dataset Programme.

It assessed the barriers and risks to the development of a primary health dataset and confirms the scope and direction of any further analysis required to shape the programme's next steps, timeframes and resource requirements.

The recommendations have been accepted by the governance group.

You can read this report here: Primary Health Dataset Programme (PHDP) Current State Analysis Report. 

After completing Phase 1 (Current State) the programme moved into Phase 2 (Design) and establishing five working groups, which comprised of membership from across the sector, from within Te Aka Whai Ora, Te Whatu Ora and Manatū Hauora.

The five groups have been progressing the recommendations from in the phase 1 (Current State):

• Data Governance Requirements Group
• Primary Care Data Group
• Analytics Leadership Group
• Technical Platform Requirements Group
• Commercial Requirements Group.

Work from each group informs recommendations for the next phases of PHDP.

Each of the working groups and members can be found on our Primary Health Dataset Working Groups page.

A report summarising the findings of phase 2 can be found here: Phase 2 Summary – Establishment of a Foundational Primary Care Data Set for New Zealand

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 United Kingdom) 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.

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.

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.

Find out more about the Hira Programme

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 clearer.

We'd love to get your feedback on the programme, including ideas, concerns, and previous experience.

Email us at phdp@health.govt.nz.