Kia ora,

I’m making this Official Information Act request as part of ADHDInquiryNZ, a grassroots, unfunded, and non-partisan volunteer initiative supporting a public petition calling for a Parliamentary inquiry into systemic harm to people with ADHD in Aotearoa. This request focuses on information held by your agency to help identify how ADHD is currently recognised within existing systems. The information gathered from this and related requests will help identify patterns across agencies and contribute to evidence provided to the Petitions Committee when the petition period closes. I appreciate the time involved in OIA responses.

Please treat this as a request for official information under the OIA. I understand Stats NZ’s obligation to assist under s 13 and that a decision should be made within 20 working days of receipt (or transfer within 10 working days). If any part of this request requires clarification, please let me know no later than 5 working days from receipt. If an extension under s 15A is needed, please state the reason and duration. This request is confined to information held by Stats NZ; please do not transfer for commentary.

Timeframe
This request covers the period 1 January 2015 to the date this request is received.

Format
Where datasets, tables, or modelling outputs are provided, please supply them in machine-readable format (CSV or original spreadsheet file), along with any data dictionaries or field definitions.

Scope clarification to reduce unnecessary work
I am not seeking internal email chains or drafts unless they are the only record of the substantive material described.
If any part of this request is likely to be refused under s 18(f) due to substantial collation, please identify that part early so I may refine it.

Please provide:

1. Current Identification Capacity for ADHD in IDI
Please outline which diagnosis codes, pharmaceutical indicators, education flags, benefit/ACC/justice variables, disability support datasets, or other IDI variables currently exist that would enable accredited researchers to identify ADHD or probable ADHD cohorts.

If ADHD cannot presently be identified in this way, please confirm this and note any known limitations.

2. Research Activity and System Awareness
The 2025 University of Otago study demonstrated that ADHD cohorts can be identified in IDI datasets and linked to cross-sector outcomes.

Please provide:

a. Any records (2015–present) showing whether ADHD specific analyses using the IDI have been:
-proposed
-approved
-undertaken
-commissioned or requested by an agency
-carried out by external researchers (e.g., Otago, AUT, or other accredited IDI researchers)

b. Any records discussing Stats NZ awareness of, or engagement with, the 2025 Otago research.

If no such documents are held, please confirm this.

3. Pipeline, Prioritisation, and Approval
Please provide any documents or advice outlining:
-how agency commissioned IDI research topics (including neurodevelopmental research) are approved or prioritised
-criteria or thresholds governing feasibility assessments
-the process for agencies to request or fund commissioned IDI analyses

4. Classification and Metadata
If ADHD is not represented as a standalone category within underlying datasets, please confirm how related information is coded (e.g., mental health, neurodevelopmental, behavioural, disability, pharmaceutical).

Please also provide:
-metadata references
-the relevant IDI Data Dictionary links or extracts showing where ADHD related fields, codes, or pharmaceutical indicators appear (or do not appear)

If any Māori data governance, Māori statistical standards, or Māori equity considerations were applied when determining how ADHD related information is categorised or represented in classification systems, please provide the relevant documents.

5. Rainbow+/Takatāpui populations
a. Please provide any analysis, metadata, or available information regarding whether ADHD related outcomes can be examined for Rainbow+/Takatāpui populations in the IDI, or confirm if such data are not collected or not linkable for this purpose.

b. How, if at all, did the 2013 Census changes relating to sex and gender categories affect the ability to analyse any overlaps between ADHD (or other neurodevelopmental conditions) and Rainbow+/Takatāpui populations in the IDI or in census-linked datasets?

c. Please describe whether internal Stats NZ teams responsible for Rainbow+/Takatāpui populations, disability statistics, and health statistics collaborate to understand intersectional data needs or gaps relevant to ADHD and other neurodevelopmental conditions.

6. Feasibility or Costing Information
Any indicative costing guidance, pricing schedules, or feasibility notes relating to commissioning an equivalent IDI analysis focused on ADHD or other neurodevelopmental conditions.

If Stats NZ does not produce such costing guidance, please confirm.

7. Gaps / Non-collection
If Stats NZ does not hold some or all of the information requested, this absence also helps clarify how ADHD is currently tracked and managed across systems.

Please confirm if any information is not held, and include any records that document:
-decisions not to collect ADHD related variables
-data limitations affecting ADHD visibility
-constraints on classification or linkage

Ngā mihi,
Elspeth Baker-Vevers