30 September 2025
Elizabeth Kirkpatrick
[email address] [FYI request #32277 email] Tēnā koe Elizabeth,
Your requests for official information, reference: HNZ00098183 / HNZ00098181
Thank you for your emails, transferred from Ministry of Health on 12 September 2025, asking
Health New Zealand | Te Whatu Ora for the following under the Official Information Act 1982 (the
OIA):
I am writing to request all available data on New Zealanders diagnosed with autism and/or
ADHD, with a specific focus on ethnic disaggregation to support an upcoming research
project.
and
I am writing to formally request access to all available data on people in Aotearoa New
Zealand diagnosed with one or more of the 7,000 rare disorders currently coded in the New
Zealand health system.
Both requests include the same breakdowns:
“Scope of Request
Please provide time-series and cross-sectional data from all relevant datasets, including:
• Integrated Data Infrastructure (IDI)
• Primary Health Organisation (PHO) enrolment and service use data
• National Minimum Dataset (NMDS)
• National Non-Admitted Patient Collection (NNPAC)
• Mortality Collection
• Mental Health and Addiction Data
• Pharmaceutical Claims and Dispensing Data
• Hospital Discharge Data
• Outpatient and Specialist Services Data
• Any relevant disability support or neurodevelopmental service datasets
Required Disaggregation
Please disaggregate all data by:
• Ethnicity, using total response categories:
1. Māori
2. Pacific peoples (including sub-ethnic groups and Pacific peoples who also identify as
Māori where possible)
3. Non-Māori, Non-Pacific
• Age group
• Sex
• Region/DHB of residence (historical) and current Te Whatu Ora region
• Socioeconomic status (NZDep or equivalent)
• Diagnosis type (autism, ADHD, or both [AuDHD])
• Service type and frequency of use
• Health outcomes (e.g., hospitalisation, medication use, specialist access)
Time Period
Please include all available data from 2000 to 2025 and note any limitations in data
availability or quality.”
Response
Your requests for all information are very broad, and substantial manual collation would be
required to locate and prepare information within scope of your request. There is also no
requirement under the Act for agencies to create new information, or compile information they do
not hold. Therefore, your request is refused under section 18(f) of the OIA, as substantial manual
research and collation would be required to bring together all relevant documents, and section
18(g) of the OIA, as the information requested is not held by the agency.
I have considered whether fixing a charge for the supply of the information or extending the
timeframe for response would enable Health NZ to respond. I do not consider that either option
would remove the impact that supplying the information would have on our other operations.
However, you may find the following publicly available links helpful in locating the information you
are seeking, or in refining your request to target specific information more effectively.
Title
Contents
URL
Hospital events Publicly and privately funded hospital
https://tewhatuora.shinyapps.io/hos
data
discharges and procedures.
pitals-web-tool/
Suicide data
Confirmed suicides and suspected
https://tewhatuora.shinyapps.io/suic
intentionally self-inflicted deaths.
ide-web-tool/
Pharmaceutical Pharmaceuticals that were dispensed in
https://tewhatuora.shinyapps.io/pha
data web tool
the community and funded by the New
rmaceutical-data-web-tool/
Zealand Government.
Virtual Diabetes Estimated numbers and prevalence of
https://tewhatuora.shinyapps.io/virtu
Register
diabetes.
al-diabetes-register-web-tool/
Maternity
Comparative maternity interventions and
https://tewhatuora.shinyapps.io/mat
clinical
outcomes data for pregnant people and
ernity-clinical-indicator-trends/
indicators
babies born.
Mortality
Mortality and demographic data for
https://tewhatuora.shinyapps.io/mor
selected causes of deaths registered.
tality-web-tool/
Fetal and Infant Deaths that occurred before one
https://tewhatuora.shinyapps.io/fetal
Deaths
completed year of life.
-and-infant-deaths-web-tool/
Report on
People giving birth, their pregnancy and
https://tewhatuora.shinyapps.io/rep
Maternity
childbirth experience, and the
ort-on-maternity-web-tool/
characteristics of live-born babies.
Title
Contents
URL
Mental Health
Specialist inpatient and community
https://tewhatuora.shinyapps.io/me
and Addiction:
mental health and addiction services.
ntal-health-and-addiction-web-tool/
Service use
Cancer web tool Cancer registration and death data on
https://tewhatuora.shinyapps.io/can
cancers in Aotearoa New Zealand.
cer-web-tool/
How to get in touch
If you have any questions, you can contact us at
[email address].
If you are not happy with this response, you have the right to make a complaint to the
Ombudsman. Information about how to do this is available at
www.ombudsman.parliament.nz or
by phoning 0800 802 602.
As this information may be of interest to other members of the public, Health NZ may proactively
release a copy of this response on our website. All requester data, including your name and
contact details, will be removed prior to release.
Nāku iti noa, nā
Danielle Coe
OIA Manager Government Services
Health New Zealand I Te Whatu Ora
