Cervical screening: Data and privacy

The National Cervical Screening Programme (NCSP) has been operating for over 30 years. It is supported by the National Cervical Screening Programme Register (the Register).

The Register holds:

• all cervical screening data, and
• supporting information about participants, providers and facilities.

If you have a cervical screening test or colposcopy, your results will be sent to the NCSP-Register and you will be enrolled on the Programme.

When you are enrolled, we will keep your information secure and only use it for purposes related to your cervical screening experience and history. Your privacy and confidentiality will be respected throughout.

We will hold your personal information in accordance with the Privacy Act 2020 and Health Information Privacy Code 2020. The Information Privacy Principles control how we collect, use, hold, disclose, access, correct, manage and dispose of your personal information.

We also comply with the additional restrictions on access to, use of, retention, and disclosure of NCSP information as specified in the Health Act 1956 Part 4A - National Cervical Screening Programme (112J).

Additional safeguards are in place on the disclosure, use, or publication of ‘protected information’. This relates to 'information that is on or from the NCSP-Register and that identifies the woman or women to whom the information relates as being Māori'.

Health Act 1956 Part 4A - National Cervical Screening Programme (external link)

Health New Zealand manages, operates and supports a national clinical record system (the Register) to support the NCSP. Your clinical care will be managed by your healthcare provider. This Privacy Statement sets out what happens to your information if you join the programme.

The NCSP is for those who have a cervix, are aged between 25 and 69 years old and entitled to publicly funded services in Aotearoa New Zealand. Early treatment for cervical cancer is usually highly successful. The NCSP will invite as many people as it can who might be eligible to participate.

• People who have identified as female on the National Health Index register will be sent an invitation, provided we have their contact details, when they are within the NCSP age range.
• We may not identify, or cannot contact, all potential NCSP participants. If you consider that screening should be available to you, and you have not been contacted, your healthcare provider will be able to help you enrol.
• If you do not qualify for the cervical screening services and we have invited you, you can contact us on 0800 50 60 50 so we can remove your contact details from our invitation database.

If you want more information about who is eligible for publicly funded services visit the Health New Zealand website.

Eligibility explained — Health New Zealand (external link)

The NCSP is subject to specific legal requirements under Part 4A of the Health Act, and the NCSP complies with these requirements.

Part 4A Health Act 1956 (external link)

You will be automatically registered for the NCSP when you become eligible for screening, from age 25. You can choose which healthcare provider to go to for screening.

You will be enrolled with the NCSP when your first result is received by the Register. The results of the screening test will be securely sent to the NCSP to record on the NCSP-Register.

Unless you formally withdraw from the NCSP, we will record all screening results sent to the NCSP, as required by the legislation. This will happen even if you are not within the eligibility age ranges, 25 to 69. If you are 19 or under, we will not communicate further with you until you are within the eligible age range.

If you have a cervical screening service, assessment or treatment services we will keep a copy of the results reported to us by the laboratory or service provider. They will send the results to the NCSP-Register and to your screen-taker or healthcare provider.

The results of any test or treatment you receive will be recorded in the Register so that we have a record of your screening history and any follow tests or treatments you may need.

Your screen-taker or healthcare provider will maintain clinical notes of your care separately from the NCSP. The results of any follow-up tests and treatment will also be included in our records.

The following people might access your information, if it is necessary for their role, and will be subject to strict confidentiality obligations.

• NCSP, National Public Health Service, Health New Zealand.
• The health professionals who are involved in your care, including your screen-taker, general practitioner, laboratory scientist, and colposcopist and administrative support staff under their direction.
• Programme Register personnel, who manage the Register and support Programme related activities, including specialist call centre staff, regional coordination centres and those responsible for providing information to those authorised to receive it.
• The Primary Health Organisation you are enrolled with.
• Support to screening providers who provide outreach services.
• Screening programme evaluators, who monitor and assess the service delivery and outcomes of the NCSP.
• Any authorised researchers — any research produced will not identify any individuals.
• Health New Zealand or Ministry of Health analytics team members to compile and publish statistics that do not identify the women to whom those statistics relate.

Identity and contact details

We hold information such as your name, age, sex at birth, gender, ethnicity (demographics), address and phone number (contact details).

This information is held in the National Health Index (NHI) dataset. The NHI contains uniquely identifying data for each person in Aotearoa New Zealand and, if you are enrolled with a Primary Health Organisation, from the National Enrolment Service.

We use this information to identify when you are eligible to be invited to participate in the NCSP and make contact with you.

If we have been unable to contact you, we may seek approval from our Data Governance Group to look at other contact information about you.

The Support to Screening Services (SSS), associated with the NCSP may try to contact you, and will record those steps in a computer programme for that purpose. This includes your updated contact details and any challenges you face in accessing services. These contact details may be shared with other Te Whatu Ora screening programmes.

Where the information is held

Health New Zealand will store your screening information on the National Cervical Screening Register. This is a ‘cloud’ based system, with secure data centres within Australia.

What the information is used for

Information about anyone registered or enrolled on the NCSP is securely stored on the NCSP-Register and is used only for purposes related to the NCSP.

This includes:

• letting you know you are eligible and inviting you to start screening
• offering outreach services to help support you to participate in the NCSP
• sending recalls and reminder about the need for future screening appointments
• reminding your healthcare providers (screen-taker, general practitioner or other healthcare provider managing your care) of your next screening test and to check your results are followed up
• recording the result of your test and any recommended further investigations
• managing your pathway through the screening system
• advising your sample taker, health professional or health facility of your previous test results if requested
• providing information to enable evaluation and review of the NCSP, to aid planning for national and regional services, education of screening service providers, checking the NCSP is working well and to help make improvements
• health research approved by an ethics committee.

Your healthcare provider will hold records as required by the Health (Retention of Health Information) Regulations 1996.

The records in the Register will be retained indefinitely for the following reasons.

• The screening history of each person is required until they are 69 years old or choose to withdraw.
• There are people who want to see what information has been collected about them. Information stored about a particular person may still have relevance to them and their descendants in the future.
• For research and statistical purposes. The information in the Register will be valuable for research, particularly in terms of long-term trends, population comparisons and health equity. This access, for statistical and research purposes will not be published in a form that could reasonably be expected to identify the individual concerned.

You can choose not to be part of the NCSP or to withdraw from it at any time. You can contact the NCSP and we will send you a form to complete.

We will keep some of your identity details in our system with a note to not contact you again. All information about your cervical screening tests and history will be removed from our records.

Your NHI number, name, contact details and ethnicity will be kept to make sure we do not contact you further, and so we can prevent further information about you being retained on the Register.

Stay enrolled but stop communication

If you want to keep your information on the Register and stay enrolled, but do not want further contact from the Register, you do not need to withdraw.

• Call us on 0800 50 60 50
• Email us at screening@health.govt.nz

If you change your mind, you can re-join the NCSP any time.

Future screening after withdrawing

You can withdraw from the NCSP and still have screening tests. Your information will not be recorded or kept on the Register.

You and your screen-taker will need to work out the best way to manage your reminders and results.

You can rejoin with the NCSP at any time.

Talk to your screen-taker about how to withdraw from the programme or fill in the 'Request to withdraw from the National Cervical Screening Programme' form.

• Request to withdraw from the NCSP form [PDF, 175 KB]
• Request to withdraw from the NCSP form [DOCX, 280 KB]

If you are enrolled in the Programme, but have asked for no contact, or you have withdrawn from the Programme, you can rejoin at any time. Fill in the 'Re-enrol in the Programme' form. 

Re-enrol in the Programme [PDF, 135 KB]

You have the right to request access to your personal or health information, and to change it if it is wrong.

You can contact them:

• by phoning 0800 729 729
• by completing the 'Health information request form' and emailing it to screening@health.govt.nz. You must provide proof of identity.

The fact sheet has more information on this.

• Requesting health information fact sheet [PDF, 203 KB]
• Health information request form [PDF, 195 KB]

Contact us if you have any other questions or concerns about your privacy or the information held about you. We need proof of your identity before we can provide you with any personal information.

• Call the freephone number 0800 729 729
• Email screening@health.govt.nz

Contact us if you have any concerns about your privacy. If you are not satisfied with our response to any privacy concerns you can contact the Office of the Privacy Commissioner

Contact — Office of the Privacy Commissioner (external link)