National Kaitiaki Group

The National Kaitiaki Group ensures Māori control and protection of Māori women’s cervical screening data.

Anyone wishing to use Māori women’s cervical screening data must apply to the National Kaitiaki Group for permission. The group:

  • considers applications for approval to disclose, use, or publish protected information
  • responds to the requests for data release as soon as reasonably practicable after receiving the request
  • grants approval for such disclosure, use or publication in appropriate cases.

Cervical screening

Cervical cancer is one of the most preventable of all cancers. About 90 percent of cases of the most common form of cervical cancer may be prevented if women have regular smear tests.

The National Cervical Screening Programme is an ongoing screening programme. It was established to reduce the incidence and mortality rate of cervical cancer by detecting cases in the early pre-cancerous curable stage.

Māori women have higher rates of sickness and death from cervical cancer than non-Māori women. Increasing Māori participation in the programme is essential.

Purpose of the National Kaitiaki Group

The Ministry of Health recognises that to be successful for Māori women, the National Cervical Screening Programme must offer screening in ways that Māori women feel are acceptable, accessible, affordable, and culturally appropriate. The programme must also appropriately promote the benefits of screening for Māori women.

The National Kaitiaki Group protects Māori women’s cervical screening data by ensuring the data is:

  • not used or published inappropriately or in a way that reflects negatively on Māori
  • used to benefit Māori women.

It also provides a way of reassuring Māori women that their data is protected so that they continue to participate in the screening programme.

The National Kaitiaki Group was established in 1995 by the Minister of Health under the Health (Cervical Screening (Kaitiaki)) Regulations 1995. The group is appointed by, and accountable to, the Minister of Health.

The National Cervical Screening Programme register

All women’s smear results are forwarded to the National Cervical Screening Programme register, as required under the 1993 amendment to the Health Act 1956 (unless a woman asks not to have her results included).

The register is an important management tool for the National Cervical Screening Programme. It holds:

  • details of enrolled women (such as their name, address, age and ethnicity)
  • smear results
  • histology results
  • details of smear takers, health centres and laboratories.

This information is essential for quality assurance and for monitoring and evaluating the effectiveness of the National Cervical Screening Programme. It shows whether or not the programme is improving health outcomes for women. For women who don’t opt-off, it also provides a back-up recall and management system.

For further information about the National Cervical Screening Programme or the programme register please go to the National Screening Unit website.

Applications for data

Any person wanting to access, use or disclose Māori women’s cervical screening data must first make an application to the National Kaitiaki Group. They must also apply to in writing to the National Cervical Screening Programme leader to request data from the register.

Applications for data are required at least two weeks prior to a National Kaitiaki Group meeting. Where important matters require consideration outside this schedule, ad-hoc meetings or teleconferences may be held with prior approval from the group.

Applications for data from the National Cervical Screening Programme register can be downloaded here:

Criteria for assessing applications

The National Kaitiaki Group has certain criteria for assessing applications to access Māori women’s data. The applicant must show how they will:

  • use the information for the benefit of Māori women
  • address the principle of the sanctity of Te Whare Tangata
  • protect the information in a manner that is culturally appropriate.

These criteria ensure data is used consistently with the Kaitiaki Regulations.

Confidentiality

In releasing approved data, the National Kaitiaki Group will ensure that such releases protect the confidentiality of Māori women on the National Cervical Screening Programme register. Very small numbers that might identify individual women will be aggregated into bigger groupings.

Membership of the National Kaitiaki Group

The 6 members of National Kaitiaki Group were appointed on 26 November 2012 for a 3-year term of office:

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