1. What is the National Cancer Screening Register (the Register) and what does it do?

The Register is a national electronic infrastructure for the recording and reporting of cancer screening data for the National Cervical Screening Program.

The Register sends invitations and reminders to screen for cervical cancer. It notifies you and/or your healthcare provider if your cervical screening test result indicates you need further investigation and/or treatment.

The Commonwealth Department of Health is the custodian of the information in the Register and has contracted Telstra Health to build and operate the Register.

2. Why does the Register need my Personal Information?

The Register collects your Personal Information for the purpose of inviting you to screen through the National Cervical Screening Program and for recording your screening test results. The Register provides a follow-up service for women that have an adverse screening result and requires your contact information for this purpose.

The Register also gives your healthcare providers access to information about your cervical screening results to help them provide you timely advice and care in the prevention of cervical cancer.

3. What kind of information does the Register collect?

The Register collects information about you to identify you and administer the functions of the Register (such as sending screening invitations and reminders and supporting clinical follow up of adverse cervical screening results). This includes your name, address, contact details, date of birth, sex, Medicare number or Department of Veterans’ Affairs (DVA) number and individual healthcare identifier.

The Register may also collect information about you in relation to cervical screening such as:

  • your screening history, for example, the date of your last cervical screening test
  • details of cervical screening test results
  • other clinical information that relates to cervical screening, including information on any clinical follow up or investigation you may have attended
  • your HPV vaccination status
  • Medicare claims information which may indicate whether you have undergone or should undergo cervical screening
  • diagnosis of cervical cancer, or pre-cursor to cervical cancer (if any)
  • your Personal Representative (if you have one)
  • your Nominated Healthcare Provider for cervical screening (if you nominate one)
  • any healthcare providers you may have seen or who have been involved your cervical screening test and follow up (i.e. GP, test collector, pathology laboratory, colposcopists or other specialists) and
  • any requests you have made about your participation in the Register.

The Register also collects:

  • your Aboriginal and/or Torres Strait Islander status
  • information about country of birth, language spoken at home and whether you need an interpreter when communicating with the Register or National Cervical Screening Program
  • information about any assistance you require due to a medical condition or disability.

If you are a Personal Representative:

  • please read “you” in this document as including yourself and any actions you undertake on behalf of the individual that you represent
  • the Register collects information about you to confirm your identity to ensure that you can act on behalf of the person that you are representing.

If you are an individual healthcare provider:

  • the Register may also collect information about you from:

  • individuals nominating you as their healthcare provider
  • other healthcare providers (eg. pathology laboratories and other specialists)
  • the Department of Human Services
  • the National Health Service Directory
  • NASH Directory
  • Endpoint Locator Service
  • State and Territory health departments

for the purpose of confirming your identity and to allow you to access and report to the Register.

4. How do I know that my Personal Information is safe in the Register? - What safeguards are in place to protect my information?

The Commonwealth Department of Health takes your privacy very seriously. The National Cancer Screening Register will collect or use your information in compliance with the Privacy Act 1988 (including the Australian Privacy Principles) and the National Cancer Screening Register Act 2016 (the NCSR Act). You can read the full privacy policy at www.ncsr.gov.au.

In addition to the legal requirements for protecting privacy, the Register operates in accordance with strict Australian Government security policies and guidelines. Only authorised personnel have access to information held in the Register and this is monitored for authentication credentials upon access.

Your information in the Register is stored within Australia in secure data storage facilities.

The National Cancer Screening Register Act 2016 (the NCSR Act) provides the legislative framework to safeguard protected information in the Register by prohibiting its use and disclosure for purposes outside the requirements to operate the Register; and creating an offence arising from the unauthorised recording, use or disclosure of personal information contained in the Register. The legislation also requires notification to the Australian Information Commissioner if there is a data breach.

5. Where does the Register get information from?

The Register collects your information from the following sources:

Source of information Information collected
You and/or your Personal Representative

Your Personal Information

Indigenous status or country of birth and language spoken at home

If you require an interpreter or assistance to manage your medical conditions or disabilities

Your requests about participation in the Register

Department of Human Services

Your Personal Information

Medicare number

Individual Healthcare Identifier

Department of Veterans’ Affairs number

Medicare enrolment data (demographic information) and claims information

Indigenous status

National HPV Vaccination Program Register HPV vaccination status (if applicable), including doses of the vaccine administered
Your healthcare providers, including pathology providers and specialists

Your screening test results

Information regarding your colposcopy

Diagnosis of cervical cancer or pre-cursor to cervical cancer

State and territory governments Information regarding your participation in the National Cervical Screening Program prior to transition of state and territory cervical screening registers and databases to the National Cancer Screening Register

6. For what purpose does the Register use and disclose my personal information?

The Register uses and discloses your information for the following purposes:

Purpose of use and disclosure To whom information is used and disclosed

Send you invitations and reminders to screen, and follow up adverse screening results

Enable you to access and update your Personal Information and cervical screening information

Enable you to manage your participation in cervical screening

You and/or your Personal Representative

Provide access to your clinical information relating to cervical screening to assist with clinical assessment

Enable referral for further examination if you have a positive result and support clinical management

Help your healthcare provider discuss screening with you and to manage your participation in screening

Support clinical decisions on recommendations on your care

Provide a quality feedback loop for Individual healthcare providers

Support pathology providers with laboratory quality assurance activities (pathology providers only)

Your healthcare providers, including pathology providers and specialists

Provide the health department or agency in the state or territory where you reside (and move to if you relocate) access to your information relating to cervical screening

Enable local program policy and service planning, monitoring and evaluation

Implement strategies to increase screening participation, access to follow up services and maximise access of under-screened and never-screened groups

State and territory governments

For research to support cervical cancer research, or other relevant research for public health purposes. Research subject to meeting the requirements of the NCSR Act.

Researchers
Enable screening program monitoring, analysis and evaluation AIHW

7. Does the Register collect other information that is not relevant to the functions of the Register?

The Register will only collect, use and disclose information about individuals participating in the National Cervical Screening Program for the purposes of the Register authorised by the NCSR Act.

Sometimes, information might be sent from pathology laboratories or specialists about people who have made a request to not have their screening information stored in the Register. The Register will either not accept or will delete or securely destroy this information so that it is not stored in the Register.

8. I don’t want to have my personal or screening information recorded in the National Cancer Screening Register. How do I stop this?

It is not compulsory for you to have your cervical screening results recorded in the Register. You can choose to opt out of the Register at any time or restrict how the Register interacts with you.

If you chose to opt out of the Register, no future clinical information will be stored on your cervical screening record and you will not receive any further correspondence from the Register. The Register will continue to record your Personal Information for the purpose of stopping future screening information being recorded. If you have a screening record that predates your opt out request, access to this information will not be restricted.

Depending on your preference, you can make the following requests to the Register:

Requests you can make to the Register Effect of this request
Nominate a healthcare provider

The healthcare provider will be able to access details about your cervical screening and receive notifications about your cervical screening (including screening reminders and follow-up of abnormal test results). With your consent, your healthcare provider can act on your behalf to make requests to the Register.

You can only have one Nominated Healthcare Provider. If you see a different healthcare provider for cervical screening, they will also be recorded in the Register to receive information about your cervical screening.

Opt out of the Register

You will not be contacted or receive or any future correspondence from the Register regarding cervical screening, including invitations to screen, reminders or follow up.

You can still schedule and undergo a cervical screening test at any time by visiting your healthcare provider, but your screening test results will not be recorded in the Register. Because the screening test results are not recorded, your healthcare provider will not be able to access your screening test results from the Register from the time you have opted out.

Should you wish to resume your participation in the Register regarding your cervical screening, you can withdraw your opt out request at any time. By withdrawing an opt out request, you will resume receiving invitations, reminders and follow up from the Register and any cervical screening test results or follow up will be recorded on the Register thereafter.

Cease receiving correspondence

You will no longer receive any contact or correspondence from the Register in relation to cervical screening.

Any information relating to your cervical screening will continue to be recorded in the Register and can be viewed by your healthcare provider.

Defer your next cervical screening date You will not receive any reminders or follow up from the Register in relation to cervical screening during the deferral period. You can still screen at any time before your nominated deferral date and the results will be recorded in the Register. This option enables you to remain on the Register while postponing screening for reasons including moving temporarily overseas, or medical advice to defer.
Nominate a Pseudonym (fictitious name)

All your results, clinical follow-up and correspondence are stored against your pseudonym. Your details in the Register are only searchable using the Pseudonym.

This option enables added privacy protection through a Pseudonym while you continue to participate in the Register.

Nominate or appoint a Personal Representative A Personal Representative is a person or organisation that is authorised to act on your behalf to access or update your Personal Information. A Personal Representative can be nominated by you or appointed on your behalf.

To manage your participation in the Register, please visit the NCSR website. Alternatively you can call the Contact Centre on 1800 627 701 (8am to 6pm Mon-Fri).

9. Will I receive correspondence if I have opted out of a state or territory Pap register?

The national Register will not contact you once you have opted out or if it is known that you have opted out of a state or territory Pap register. If you previously opted out of your local state or territory register you might still receive invitations or other correspondence from the national Register. This is because some of the local state and territory registers de-identified Personal Information, so the national Register will not know you have previously opted out. If this happens, you will need to request that you are opted out of the national Register. Please refer to Question 8 for information on how to manage your participation in the Register.

10. Who can access my Personal Information?

There are strict rules about who can access or use your personal information. Your information can only be accessed for purposes related to the Register and the National Cervical Screening Program, or for other purposes authorised by law.

  • You can ask for access to your Personal Information or request to correct it.
  • If you have a Personal Representative (parent, guardian, trustee, power of attorney or nominated person) they will be authorised to access your Personal Information.
  • Department of Health as the data custodian for the Register is authorised to access your Personal Information but only for the purposes of the Register.
  • Telstra Health as the contracted service provider for the Register is authorised to access and use your Personal Information but only for the purpose of operating the Register.
  • Healthcare providers (including pathology providers and specialists) can access your information for the purpose of providing you healthcare in relation to cervical cancer.
  • State and territory health departments can access your Personal Information in the Register to enable local program policy and service planning, monitoring and evaluation and to implement strategies to increase screening participation, access to follow up services and maximise access of under-screened and never-screened groups.
  • Professional disciplinary bodies, such as the Medical Board of Australia, child protection officers and law enforcement officers may be provided with access to your Personal Information where that access will enable or assist them to perform their functions.
  • Other persons may be provided with access to your Personal Information where it is for the purposes of court or tribunal proceedings or a coronial inquiry or in accordance with an order of a court, tribunalor coroner.

11. Telstra Health operates the Register. Will my data be used for telemarketing by Telstra?

Telstra (including Telstra Health) are only permitted to use your Personal Information for the purposes of the Register to support the National Cervical Screening Program.

12. What if my personal details are incorrect or change?

If your personal details change or are listed incorrectly please call the Contact Centre on 1800 627 701.

13. Who do I contact if I have concerns about privacy or want to make a privacy complaint?

If you have any privacy concerns, please contact the Department of Health Privacy Contact Officer through the following:

You also have the option of contacting the Office of the Australian Information Commissioner through its website if you wish to make a privacy complaint against us, or if you are not satisfied with how we have handled your complaint.

14. Where can I get more information?

For more information on privacy, please refer to the Register’s privacy policy available on the Register website.

Additional Frequently Asked Questions relating to the Register are available on the Department of Health website.

For more information on the Privacy Act and the Australian Privacy Principles, please refer to the Office of the Australian Information Commissioner website.

15. Definitions

Contracted service provider A contracted service provider is an entity or organisation that is engaged to perform the functions of the National Cancer Screening Register. The Contracted service provider is Telstra Health.
Department of Health (Health) Means the Commonwealth Department of Health (Health), which has a diverse set of responsibilities and aims to deliver better healthcare services, including through the National Cancer Screening Register.
Department of Human Services (DHS) The Commonwealth Department of Human Services (DHS) is responsible for the service delivery of Medicare and provides access to social, health and other payments. DHS operates the Healthcare Identifiers Service.
Department of Veterans’ Affairs (DVA) The Commonwealth Department of Veterans’ Affairs is responsible for carrying out government policy and implementing programs to fulfil Australia’s obligations to veterans, war widows and widowers, and serving and former members of the Australian Defence Force.
Healthcare provider A healthcare provider means an individual healthcare provider or a healthcare provider organisation.
Healthcare provider organisation A healthcare provider organisation is an entity, or a part of an entity, that has conducted, conducts, or will conduct, an enterprise that provides healthcare (including healthcare provided free of charge such as a hospital).
Individual Healthcare Identifier The Individual Healthcare Identifier is a 16 digit unique number used to identify individuals who receive or may receive healthcare in the Australian health system.
National Cervical Screening Program (NCSP) A Joint cervical screening program of the Australian and State and Territory Governments.

National Cancer Screening Register

(NCSR, the Register)

A Register supporting the National Cervical Screening Program. The Register sends invitations and reminders to screen for cervical cancer. It notifies you and/or your healthcare provider if your cervical screening test result indicates you need further investigation and/or treatment.
Individual healthcare provider An individual healthcare provider is an individual who has provided, provides, or is to provide, healthcare; or is registered by a registration authority as a member of a particular health profession (e.g. a doctor, specialist, pathology provider, registered nurse, an Aboriginal or Torres Strait Islander health practitioner).
Nominated healthcare provider A nominated healthcare provider is an individual healthcare provider that an individual has requested be recorded to receive information about their cervical screening.
Personal Information Has the same meaning as in the Privacy Act 1988 (Cth). Personal Information includes health information and any information or opinion about an individual that relates to the identification of the individual or allows the individual to be identified. Examples of Personal Information are; a person’s name, address, phone number, Medicare number, employment details, a medical test result
Personal Representative A Personal Representative is someone (a parent, guardian, trustee, power of attorney or nominated person) that is authorised to access your personal information.
Pseudonym A Pseudonym or alias is a fictitious name that a person assumes for a particular purpose (e.g. for the National Cervical Screening Program), which can differ from their original or true name. For example, John Smith may choose to be identified as Jack Doe. The Register will address all communication (including notifications sent to healthcare providers) to the pseudonym.
Register The National Cancer Screening Register