$4 million for shared record to go-live mid-year

NEWS - eHealthNews.nz editor Rebecca McBeth 

The new Shared Digital Health Record (SDHR) project has a budget of $4 million through to its expected go-live at the end of June 2025.

Speaking at an HL7 symposium on March 18, clinical informatics director Matthew Valentine said the initial focus is on providing access to four primary care data domains; conditions, allergies and adverse reactions, observations and encounters.

This primary care data will be combined with existing national data services; the National Health Index (NHI), Medicines Data Repository (MDR), Aotearoa Immunisations Register (AIR), and entitlements and enrolments information.

Valentine said that privacy and patient choice is central to the project with access controls and audits, as well as respecting existing privacy flags.

The SDHR will initially be read-only, but with a vision to evolve it to become bidirectional and ultimately bring in information from secondary care, such as lab results.

Darren Douglass, acting chief information technology office, says this SDHR project has a limited initial scope and $4 million is funded from the Health NZ Digital Services’ budget through to 30 June 2025. 

Further development of the SDHR will depend on funding to not only enhance the data included, but also extend access into other parts of the health system, such as first responders, hospitals and specialist services. This wider business case will be finalised over the coming months.  

He also assured providers and patients that they will be able to opt out of contributing data to the SDHR.

Clinical director primary and community care at Health NZ, Sarah Clarke, presented at the symposium where she highlighted the urgent need for a system that ensures critical health data follows patients, wherever they go for care.

She said patients expect that health professionals have access to their basic information if they turn up at an emergency department or urgent care centre, but that is not always the case.

While some regions have shared health record systems, the problem is that, "if you go from one of those regions to another, it does not work," Clarke said.

“If you choose to access something like a telehealth service, it may be that they have no access to your data, so it makes it very tricky to provide safe care, and it means that people get very frustrated repeating themselves again and again and again.”

One of the uses for the shared record will be the 24/7 telehealth service that was recently announced by Health Minister Simeon Brown and will cost $164.6 million over five years.

Douglass says, “this initial release will connect data from existing shared digital health records and nationally available clinical data into a consistent view leveraging existing access, consent and privacy controls.  

“Health NZ has previously worked with the health sector on access to shared health information. Work completed by Health NZ, Ministry of Health and the wider primary care sector, has contributed to our foundational understanding, but most notably programmes associated with the Covid19 response and the Hira programme, which was paused last year,” he says.  

The $4 million investment covers work on Health NZ readiness to ensure the SDHR service is fit for purpose, clinically safe, and reliable and includes testing options for privacy controls, and understanding consumer priorities around consent and use of their data. 

Some general practices have questioned the idea of a new national database of patient information and the role of practice management systems in providing that data to Health NZ.

Douglass says that while funding is being provided to uplift technical capability for the primary care sector where required, “it is not being used to pay for access to any data”.

"We know that delivery of SDHR needs to be a collaborative undertaking with the primary care sector, leveraging and enhancing existing capability where it makes sense," he says. 

“We are re-engaging with our primary care partners to work with them on the data we need to make available for clinical use, how we plan to use and keep it safe, including which care settings will be prioritised for future access."

GPNZ says in its latest newsletter that collaboration and joint workshops are now underway in partnership with Te Whatu Ora to support development of the shared record. 

The project is targeting an initial launch in the middle of this year.

Image: Clinical director primary and community care at Health NZ, Sarah Clarke, speaking at an HL7 symposium on March 18

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