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. For clarity, this request is not seeking clinical guidance or clinical principles; it focuses on policy, governance, oversight, data visibility, equity analysis, and system-level responsibilities. The information gathered from this and related requests will be used to help identify any patterns across agencies and will contribute to the 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 the agency’s obligation to assist under s 13 and that a decision should be made within 20 working days of receipt (with any transfer to occur 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 Manatū Hauora; please do not transfer for commentary.

This request follows recent research, including the 2025 University of Otago study, showing that ADHD and other neurodevelopmental conditions can be reliably identified in the IDI and that neurodivergent youth experience disproportionately high premature mortality. These findings raise important questions about national monitoring, governance, and policy oversight.

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, I request they be supplied in machine-readable format (CSV or original spreadsheet file) along with any data dictionaries or field definitions.

Scope clarification to reduce unnecessary work
To streamline this request, I am not seeking internal email chains, draft documents, or personal information about individuals unless they are the only holders of the substantive information described. If any part of this request is likely to be refused under s 18(f) due to substantial collation, please identify that specific part early so I can refine it.

Please provide:

1. Leadership / Ownership
Any documents identifying which team, unit, or role holds responsibility for ADHD policy, inter-agency coordination, governance, or oversight.

2. Policies / Frameworks
Any national policies, guidelines, briefings or advice specifically addressing ADHD, or service-delivery guidance since 2015 that address ADHD diagnosis, treatment, service delivery, or cross-agency coordination.

This section refers to national health policies and Ministry-held service-delivery guidance, and does not seek the New Zealand Clinical Principles Framework for ADHD, which is covered in a separate request.

3. Data & Monitoring
Any documentation describing how ADHD is identified, coded, monitored, or reported in national health datasets (for example ICD, ATC, SNOMED, or pharmacy indicators), and any outcome or performance measures used since 2015.
If ADHD is grouped under another category, please specify which category and provide the associated coding guidance or definitions.

4. IDI Evidence and Follow-Up
In light of growing evidence (including the 2025 University of Otago study) that ADHD cohorts can be identified in the IDI and that neurodivergent youth face significantly higher premature mortality, please provide:
a. Any documents, advice, or correspondence (2018–present) discussing Manatū Hauora’s response to, use of, or planned engagement with ADHD related research using the IDI;
b. Any records of Ministry led or Ministry commissioned analyses of ADHD using the IDI or linked administrative datasets; and
c. Any plans, proposals, or discussions regarding the development of ongoing ADHD population level monitoring or outcomes reporting using the IDI or equivalent data systems.

5. Equity / Risk
Any analysis, reports, or targeted briefings addressing inequities, suicide risk, self-harm risk, health loss, or comorbidity for people with ADHD, and any actions taken or proposed in response.

If any Māori data governance or Māori equity considerations were applied when deciding whether to collect, categorise, or monitor ADHD-related information, please provide the relevant documents.

Rainbow+/Takatāpui populations: Please include any analysis or data relating to ADHD outcomes, or confirm if such data are not collected.

If no such analysis exists, please confirm this.

6. Rights / Compliance
Any assessments or advice since 2015 considering obligations relevant to ADHD under:
the New Zealand Public Health and Disability Act
the UN Convention on the Rights of Persons with Disabilities (UNCRPD)
accessibility and non-discrimination requirements (including Human Rights Act 1993 and NZBORA s19).

7. Oversight Position
Please confirm whether Manatū Hauora currently holds policy or service-delivery oversight for ADHD, or whether this function is formally assigned elsewhere.

If no agency holds this role, please confirm this.

If information is not held
If your agency does not hold some or all of the information requested, that absence also helps clarify how ADHD is currently tracked and managed across the system. Please confirm if the information is not held, and include any existing documents or correspondence that record a decision not to collect or monitor ADHD-related information.

Please also specify how related matters are categorised (e.g., under neurodiversity, mental health, disability, or other categories).

Ngā mihi,
Elspeth Baker-Vevers