Kia ora Elizabeth

 

Thank you for your request under the Official Information Act 1982 (the
Act), received by the Ministry of Health on 11 September 2025. You
requested:

 

Scope of Request:
Please provide time-series and cross-sectional data from all relevant
datasets, including but not limited to:
•       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
•       National Collections for Cancer, Rare Disorders, and Genetic
Conditions
•       Laboratory and Pharmaceutical Claims Data
•       Hospital Discharge Data
•       Outpatient and Specialist Services Data

Required Disaggregation:
Please disaggregate all data by:
•       Ethnicity, using total response categories:
o       Mâori
o       Pacific peoples (including sub-ethnic groups and Pacific peoples
who also identify as Mâori where possible)
o       Non-Mâori, Non-Pacific
•       Age group
•       Sex
•       Region/DHB of residence (historical) and current Te Whatu Ora
region
•       Socioeconomic status (NZDep or equivalent)
•       Disorder type and ICD code
•       Service type and frequency of use
•       Health outcomes (e.g., hospitalisation, mortality, treatment
access)

Time Period:
Please include all available data from 2000 to 2025, noting any gaps in
data availability or quality.

Additional Notes:
If any datasets require secure access via the IDI or Data Lab, please
advise on the appropriate process and approvals. If metadata or data
dictionaries are available for rare disorder coding, please include these,
along with a list of which Orphanet-coded disorders are currently
recognised in New Zealand datasets.

 

The reference number for your request is H2025072419. As required under
the Act, the Ministry will endeavour to respond to your request no later
than 20 working days after the day your request was
received: [1]http://www.ombudsman.parliament.nz/

 

If you have any queries related to this request, please do not hesitate to
get in touch ([2][email address]).

 

 

Ngâ mihi 
 
OIA Services Team 
[3]Ministry of Health information releases 

 

show quoted sections

References

Visible links
1. http://www.ombudsman.parliament.nz/
2. mailto:[email address]
3. https://www.health.govt.nz/about-ministr...

Kia ora Elizabeth

  

Thank you for your request under the Official Information Act 1982 (the
Act) to the Ministry of Health-Manatū Hauora on 10 September 2025.

 

 “Scope of Request:
Please provide time-series and cross-sectional data from all relevant
datasets, including but not limited to:
•       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
•       National Collections for Cancer, Rare Disorders, and Genetic
Conditions
•       Laboratory and Pharmaceutical Claims Data
•       Hospital Discharge Data
•       Outpatient and Specialist Services Data

Required Disaggregation:
Please disaggregate all data by:
•       Ethnicity, using total response categories:
o       Māori
o       Pacific peoples (including sub-ethnic groups and Pacific peoples
who also identify as Māori where possible)
o       Non-Māori, Non-Pacific
•       Age group
•       Sex
•       Region/DHB of residence (historical) and current Te Whatu Ora
region
•       Socioeconomic status (NZDep or equivalent)
•       Disorder type and ICD code
•       Service type and frequency of use
•       Health outcomes (e.g., hospitalisation, mortality, treatment
access)

Time Period:
Please include all available data from 2000 to 2025, noting any gaps in
data availability or quality.”   

   

Your request asks for information which is more closely connected with the
functions of Health New Zealand (Te Whatu Ora). For this reason, the
Ministry has decided to transfer your request to Health New Zealand under
section 14(b)(ii) of the Act. You can expect a response from their agency
in due course. Their contact email is: [1][email address]. 

 

The part of your request relating to " Integrated Data Infrastructure
(IDI)"  is more closely connected with the functions of Statistics New
Zealand. For this reason, the Ministry has decided to transfer your
request to Statistics New Zealand under section 14(b)(ii) of the Act. You
can expect a response from their agency in due course. Their contact email
is: [2][email address]. 

 

    

Under section 28(3) of the Act you have the right to ask the Ombudsman
to review any decisions made under this request. The Ombudsman may be
contacted by email at: [3][email address] or by calling 0800
802 602. 

Ngā mihi 

  

OIA Services Team

Ministry of Health  | Manatū Hauora 

M[4]inistry of Health information releases 

--------------------------------------------------------------------------

From: Elizabeth Kirkpatrick
<[FOI #32277 email]>
Sent: Wednesday, 10 September 2025 15:20
To: OIA Requests <[email address]>
Subject: Official Information request - Data on Rare Disorder Prevalence &
Characteristics in NZ
 
Dear Ministry of Health,

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.

Scope of Request:
Please provide time-series and cross-sectional data from all relevant
datasets, including but not limited to:
•       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
•       National Collections for Cancer, Rare Disorders, and Genetic
Conditions
•       Laboratory and Pharmaceutical Claims Data
•       Hospital Discharge Data
•       Outpatient and Specialist Services Data

Required Disaggregation:
Please disaggregate all data by:
•       Ethnicity, using total response categories:
o       Māori
o       Pacific peoples (including sub-ethnic groups and Pacific peoples
who also identify as Māori where possible)
o       Non-Māori, Non-Pacific
•       Age group
•       Sex
•       Region/DHB of residence (historical) and current Te Whatu Ora
region
•       Socioeconomic status (NZDep or equivalent)
•       Disorder type and ICD code
•       Service type and frequency of use
•       Health outcomes (e.g., hospitalisation, mortality, treatment
access)

Time Period:
Please include all available data from 2000 to 2025, noting any gaps in
data availability or quality.

Additional Notes:
If any datasets require secure access via the IDI or Data Lab, please
advise on the appropriate process and approvals. If metadata or data
dictionaries are available for rare disorder coding, please include these,
along with a list of which Orphanet-coded disorders are currently
recognised in New Zealand datasets.

Yours faithfully,
Elizabeth Kirkpatrick

-------------------------------------------------------------------

This is an Official Information request made via the FYI website.

Please use this email address for all replies to this request:
[FOI #32277 email]

Is [Ministry of Health request email] the wrong address for Official Information requests
to Ministry of Health? If so, please contact us using this form:
[5]https://aus01.safelinks.protection.outlo...

Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[6]https://aus01.safelinks.protection.outlo...

If you find this service useful as an Official Information officer, please
ask your web manager to link to us from your organisation's OIA or LGOIMA
page.

show quoted sections

Tēnākoe, 

Thank you for contacting Health New Zealand | Te Whatu Ora. 
This is an automatic reply to confirm that we have received your email. 

Depending on the nature of your request you may not receive a response for
up to 20 working days. 
We will try to respond to your query as quickly as possible.

Ngā mihi

Health NZ | Te Whatu Ora.

Statement of confidentiality: This email message and any accompanying
attachments may contain information that is IN-CONFIDENCE and subject to
legal privilege. If you are not the intended recipient, do not read, use,
disseminate, distribute or copy this message or attachments. If you have
received this message in error, please notify the sender immediately and
delete this message

Tçnâ koe Elizabeth,

 

I am writing to acknowledge receipt of your below Official Information Act
request, which was partially transferred to Stats NZ by the Ministry of
Health on 19 September 2025 as per the attached email.

 

We will endeavour to respond to your request as soon as reasonably
practicable and in any event no later than 17 October 2025, being 20
working days after the day on which your request was trasnferred. If we
are unable to respond to your request by then, we will notify you of an
extension of that timeframe.

 

Your request is being handled by the Office of the Government Statistician
and Chief Executive. If you have any queries, please feel free to contact
me using this email address. If additional factors come to light which are
relevant to your request, please do not hesitate to contact us so that
these can be taken into account.

 

Ngâ mihi

 

 

Lily Reid (she/her)
Advisor – Executive and Government Relations, Office of the Chief
Executive

Kaitohutohu – Ngâ Hononga Whakawaho, Kâwanatanga hoki, Tari o te Tumu
Whakahaere
Stats NZ | Tatauranga Aotearoa | [1]stats.govt.nz

 

About Aotearoa, for Aotearoa

Data that improves lives today and for generations to come

 

[2]Facebook | [3]Twitter | [4]LinkedIn 

 

------------------------------------------------------------------------

From: Elizabeth Kirkpatrick
<[5][FOI #32277 email]>
Sent: Wednesday, 10 September 2025 15:20
To: OIA Requests <[6][email address]>
Subject: Official Information request - Data on Rare Disorder Prevalence &
Characteristics in NZ

 

Dear Ministry of Health,

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.

Scope of Request:
Please provide time-series and cross-sectional data from all relevant
datasets, including but not limited to:
•       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
•       National Collections for Cancer, Rare Disorders, and Genetic
Conditions
•       Laboratory and Pharmaceutical Claims Data
•       Hospital Discharge Data
•       Outpatient and Specialist Services Data

Required Disaggregation:
Please disaggregate all data by:
•       Ethnicity, using total response categories:
o       Mâori
o       Pacific peoples (including sub-ethnic groups and Pacific peoples
who also identify as Mâori where possible)
o       Non-Mâori, Non-Pacific
•       Age group
•       Sex
•       Region/DHB of residence (historical) and current Te Whatu Ora
region
•       Socioeconomic status (NZDep or equivalent)
•       Disorder type and ICD code
•       Service type and frequency of use
•       Health outcomes (e.g., hospitalisation, mortality, treatment
access)

Time Period:
Please include all available data from 2000 to 2025, noting any gaps in
data availability or quality.

Additional Notes:
If any datasets require secure access via the IDI or Data Lab, please
advise on the appropriate process and approvals. If metadata or data
dictionaries are available for rare disorder coding, please include these,
along with a list of which Orphanet-coded disorders are currently
recognised in New Zealand datasets.

Yours faithfully,
Elizabeth Kirkpatrick

-------------------------------------------------------------------

This is an Official Information request made via the FYI website.

Please use this email address for all replies to this request:
[7][FOI #32277 email]

Is [8][Ministry of Health request email] the wrong address for Official Information
requests to Ministry of Health? If so, please contact us using this form:
[9]https://aus01.safelinks.protection.outlo...

Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[10]https://aus01.safelinks.protection.outlo...

If you find this service useful as an Official Information officer, please
ask your web manager to link to us from your organisation's OIA or LGOIMA
page.

show quoted sections