Have your say

Public comment was sought to help us determine whether HISO 10038 standards are:

  1. no longer required as they have been superseded by new standards created by Te Aho o Te Kahu; or
  2. still fit for purpose and should be finalised; or
  3. useful but need to be updated and published as final documents.

This process was carried out by the Health Information Standards Organisation (HISO).

This consultation closed on Wednesday 30 November 2022.

Download: Questionnaire - DOCX, 54 KB

Please include your responses in this questionnaire then email it to us. You do not have to answer all questions.

HISO 10038 standards

HISO 10038.0:2017 Preface to the Cancer Data Standards

  • Published in 2017, provides guidance on the development of new cancer data specifications.

HISO 10038.1:2011 Interim National Cancer Core Data Business Process Standard

  • Published in 2011, provides a consistent approach to the collection and storage of core cancer data in New Zealand.

HISO 10038.3:2011 Interim National Cancer Core Data Definitions Standard

  • Published in 2011, provides details of the data elements and the format for capturing the core information for cancer.


Te Whatu Ora – Health New Zealand has been asked by Te Aho o Te Kahu (Cancer Control Agency) to withdraw these standards.

The rationale for the request to withdraw these documents are as follows:

  • A significant amount of work has been completed or is underway for cancer-related standards through joint Te Aho o Te Kahu and HISO work (for example, the structured pathology reporting for cancer standards, MDM Data Standard, ACT-NOW Data Standard). The original standards were used as a base for this work and have been superseded by the new standards. All the core data elements originally defined in the core definitions standard are covered in the new standards.
  • They were written to support strategies and action plans that no longer exist. The new standards have been/are being developed to support the New Zealand Cancer Action Plan 2019-2029.
  • They refer to standards that have been updated or withdrawn.
  • Other documents, including the Health Information Security Framework and Health Information Governance Guidelines, have removed the need for a separate business process document.

Te Aho o Te Kahu – standards activity

Te Aho o Te Kahu is a government agency created in recognition of the impact cancer has on the lives of New Zealanders. They lead and unite efforts to deliver better cancer outcomes for Aotearoa New Zealand. Te Aho o Te Kahu is guided by the goals and outcomes in the National Cancer Action Plan 2019-2029.

To help enable Te Aho o Te Kahu’s central goal of achieving equity for all New Zealanders affected by cancer, they are developing an overarching informatics programme of work called CanShare to support clinical and patient decision-making at the time and point of care. Based on SNOMED CT medical terminology, the FHIR interoperability standard and HISO Standards, CanShare will enable the timely sharing of relevant and accurate cancer data.

To achieve this, they are working with a range of clinical specialities to transition to an interoperable digital health environment through the development and subsequent national adoption of HISO-endorsed data standards over the coming years.

For more information on the work underway, visit the Te Aho o Te Kahu website: Te Aho o Te Kahu - CanShare