National Kaitiaki Group

The Ministry of Health recognises that to be successful for Māori women, the National Cervical Screening Programme (NCSP) 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 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 Kaitiaki Group’s considers applications for approval to disclose, use, or publish ‘protected information’, being information that is on or from the NCSP Register and that identifies the woman or women to whom the information relates as being Māori.

The National Kaitiaki Group protects Māori women’s cervical screening data by ensuring that this 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 they continue to participate in the screening programme.

 The NCSP was established to reduce the incidence and mortality rate of cervical cancer by cervical screening which identifies early cervical cell changes that are able to be detected and treated in the early pre-cancerous curable stage.

All women’s cervical screening results are forwarded to the NCSP Register, as required under Part 4A of the Health Act 1956 (unless a woman asks not to have her results included).

The register is an important management tool for Programme. It holds:

• the details of enrolled women (such as their name, address, age and ethnicity)
• cervical screening results
• the details of sample takers and their clinics
• test results from colposcopy services.
  
  

This information is essential for quality assurance and for monitoring and evaluating the effectiveness of the Programme. It shows whether or not the programme is improving health outcomes for women. It also provides a back-up recall and management system for women who are enrolled.

For further information about the NCSP and the NCSP Register please go to the National Screening Unit website.

Any person wanting to access, use or disclose Māori women’s cervical screening data on the NCSP Register must first make an application to the National Kaitiaki Group. You can also apply in writing to the NCSP Programme Manager to request data from the Register and will be advised if the request needs to be forwarded to the National Kaitiaki Group.

The National Kaitiaki Group meets as required up to four times a year. Applications for data are required at least three weeks prior to a meeting.

Applications for data from the NCSP Register can be downloaded here:

• National Cervical Screening Programme Register application form available from the National Screening Unit’s website.
• National Kaitiaki Group application form (Word, 117 KB)
• National Kaitiaki Group application form (PDF, 173 KB)

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 the use of data is consistent with the Kaitiaki Regulations.

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

Dr Helen Wihongi (Ngāti Porou, Ngāpuhi, Te Whānau a Āpanui, Ngāti Hine) BASocSci, Hons, PhD, PGDipPsych(Com) is the Director of Māori Health Research across the Waitematā and Auckland DHBs.

Helen has worked in the health sector most of her working life, with time out to have and raise two sons. She was involved in the establishment of Māori health providers in the 70’s including being part of the early debates around the establishment of the Māori women’s cervical screening rōpu. Helen has a particular interest in Māori health and influencing changes to the health system that improve health outcomes for Māori. Her doctoral thesis critiqued the cervical screening policy for its responsiveness to Māori and she was involved in the reviewing the National Cervical Screening Programme on two occasions.
  

Helen chairs the Māori Governance Rōpu for Ira Tātai Whakaheke, a tertiary genomics pathway rōpu, and is a committee member of the Auckland Regional Bio-bank governance and scientific boards. These roles include debates around the use of Māori tissue and data. She has a strong background in funding and planning and sits on ethics and funding committees.

Ebony Duff is a consultant with over 18 years of experience traversing law, policy, governance, and media with a particular focus on rights and interests acquired under Te Tiriti o Waitangi.

Ebony is also currently a trustee on Te Roopu Taurima Trust, the largest national kaupapa Māori Disability Support Service, supporting people of all ethnicities with intellectual impairments.

She holds a Bachelor of Laws/Bachelor of Arts from the University of Auckland, is an enrolled barrister and solicitor of the High Court of New Zealand, and a member of the Institute of Directors. Ebony is of Te Aupouri, Ngaati Te Ata and Ngāti Rangitihi descent.

Sandra Corbett is a long-standing active member of the Te Rōpū Wāhine Māori Toko I te Ora – Māori Women Welfare League, Waipatu Karamu branch of the Ikaroa Region. She is a nurse who has worked for the Hawke’s Bay DHB (HBDHB) National Cervical Screening Programme since 1999, and is currently the Kaiwhakahaere for Population Screening at HBDHB. She serves on a number of national health advisory groups – is a member of the National Cervical Screening Advisory Group, and co-chair of NZNO Te Matau a Māui Regional Council. Sandra is part of the National Kaimahi Roopu, which provides opportunities for regular communications and offers a consultative forum and mandate to develop and progress priorities for Māori. This contributes to the whāriki enabling her representation on the Ministry of Health advisory groups she is involved in. Sandra’s iwi affiliation is Te Arawa / Ngati Pikiao.

Tasha Wharerau (Bentley) has worked in wāhine Māori health positions over the past 11 years, providing advocacy and support to whānau in breast and cervical screening and promoting breastfeeding. She is currently the Whānau Ora practice coordinator at Ngāti Hine Health Trust in the far north, and the Wāhine Ora Health Promoter at Women’s Health Action in Auckland. She is a member of Te Roopu Whakaruruhau with the New Zealand Breastfeeding Alliance and is an active member of Te Wānanga o Hine Koopu in Te Tai Tokerau. Tasha is a survivor of breast cancer and has a passion for matauranga Māori as our guide to better health outcomes for whānau Māori. She affiliates to Te Mahurehure, Ngāpuhi and Ngāti Porou.