1. What kind of information does the National Register collect?
The National Register collects information including your name, address, contact details, date of birth, sex, Medicare number or Department of Veterans’ Affairs (DVA) number and individual healthcare identifier. This helps us identify you, send screening invitations and reminders, and support clinical follow-up of adverse screening results.
The National Register may also collect information about you in relation to cervical and bowel screening, such as:
- your screening history, for example, the date of your last screening test
- details of screening test results
- other clinical information that relates to screening, including information on any clinical follow up or investigation you may have attended
- your HPV vaccination status (specific to cervical screening)
- Medicare claims information which may indicate whether you have undergone or should undergo screening
- diagnosis of cervical or bowel cancer, or pre-cursor to cervical or bowel cancer (if any)
- your Personal Representative (if you have one)
- your nominated healthcare provider for cervical and bowel screening (if you nominate one)
- any healthcare providers you may have seen or who have been involved with your cervical or bowel screening tests and follow-ups (i.e. GP, test collector, pathology laboratory, colposcopists, colonoscopists or other specialists)
- any requests you have made about your participation in the national bowel or cervical screening programs.
The National Cancer Screening 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 us or program representatives
- 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 National Cancer Screening Register collects information about you to confirm your identity to ensure you can act on behalf of the person that you are representing.
If you are an individual healthcare provider:
To confirm your identity and allow you to access and report to the National Cancer Screening, we may also collect information about you from:
- individuals nominating you as their healthcare provider
- other healthcare providers (e.g. 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.
2. How do I know that my Personal Information is safe? What safeguards are in place to protect my information?
In addition to the legal requirements for protecting privacy, the National Cancer Screening Register operates in accordance with strict Australian Government security policies and guidelines. Only authorised personnel have access to information held in the National Register and this is monitored for authentication credentials upon access.
Your information in the National Cancer Screening 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 National Register by prohibiting its use and disclosure for purposes outside the requirements of operating the National Register and by creating an offence arising from the unauthorised recording, use or disclosure of Personal Information contained in the National Register. The legislation also requires notification to the Australian Information Commissioner if there is a data breach.
3. Where does the National Register get information from?
The National 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 national bowel and cervical screening programs
|Department of Human Services||
Your Personal Information
Individual Healthcare Identifier
Department of Veterans’ Affairs number
Medicare enrolment data (demographic information) and claims information
|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 or colonoscopy
Diagnosis of cervical or bowel cancer or pre-cursor to cervical or bowel 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
Information regarding your participation in the National Bowel Cancer Screening Program
4. What does the National Register use and disclose my Personal Information for?
The National Register uses and discloses your information for the following purposes:
|Purpose of use and disclosure||To whom information is used and disclosed|
To send you invitations and reminders to screen and to follow up adverse screening results
To enable you to access and update your Personal Information and cervical or bowel screening information
To enable you to manage your participation in cervical or bowel screening
You and/or your Personal Representative
To provide access to your clinical information relating to cervical or bowel screening to assist with clinical assessment
To enable referral for further examination if you have a positive result and support clinical management
To help your healthcare provider discuss screening with you and to manage your participation in screening
To support clinical decisions with recommendations on your care
To provide a quality feedback loop for individual healthcare providers
To support pathology providers with laboratory quality assurance activities (pathology providers only)
|Your healthcare providers, including pathology providers and specialists|
To 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 or bowel screening
To enable local program policy and service planning, monitoring and evaluation
To implement strategies to increase screening participation and access to follow-up services
|State and territory governments|
To support cervical and bowel cancer research and other relevant research for public health purposes. Research is subject to meeting the requirements of the NCSR Act.
|To enable screening program monitoring, analysis and evaluation||AIHW|
5. Does the National Cancer Screening Register collect other information that is not relevant to its functions?
The National Register will only collect, use and disclose information about individuals participating in the National Cervical Screening Program for the purposes of the National 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 National Register. The National Register will either not accept or will delete or securely destroy this information so that it is not stored in the National Register.
6. 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 or bowel screening results recorded in the National Register. You can choose to opt out of the National Register at any time or restrict how the National Register interacts with you.
If you chose to opt out, no future clinical information will be stored on your screening record and you will not receive any further correspondence from us. We 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 National Cancer Screening 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 and receive notifications about your 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 National Register.
If you see a different healthcare provider for cervical or bowel screening, they will also be recorded in the National Register to receive information about your screening.
|Opt out of the National Register||
You will not be contacted or receive any future correspondence from us regarding cervical or bowel screening, depending on the program(s) you choose to opt out of, including invitations to screen, reminders or follow up.
You can still schedule and undergo a cervical or bowel screening test at any time, but your screening test results will not be recorded in the National Register. Because the screening test results are not recorded, your healthcare provider will not be able to access your screening test results from the National Register from the time you have opted out.
If you want to opt back in to the National Register for either cervical or bowel screening, you can withdraw your opt-out request at any time. By withdrawing an opt-out request, you will start receiving invitations, reminders and follow-ups from the National Register again, and any screening test results or follow-ups will be recorded on the National Register from then on.
|Cease receiving correspondence (Cervical screening only)||
You will no longer receive any contact or correspondence from us in relation to cervical screening.
Any information relating to your cervical screening will continue to be recorded in the National 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 National 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 National Register. This option enables you to remain on the National 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 National Register are only searchable using the Pseudonym.
This option enables added privacy protection through a Pseudonym while you continue to participate in the National 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.
See manage your participation for more information. Alternatively, you can call the Contact Centre on 1800 627 701 (8am to 6pm Mon-Fri).
7. Will I receive correspondence if I have opted out of a state or territory 'Pap' register?
The National Cancer Screening Register will not contact you once you have opted out. If you previously opted out of your local state or territory cervical screening program that referred to the ‘Pap’ register, you might still receive invitations or other correspondence from us. This is because some of the former local state and territory registers de-identified personal information, so we will not know you have previously opted out. If this happens, you will need to request to opt out of the National Cancer Screening Register. For more information, see manage your participation.
8. 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 National Cancer Screening Register, the National Cervical Screening Program and the National Bowel Cancer Screening Program, or for other purposes as 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.
- As the data custodian for the National Register, the Australian Government Department of Health is authorised to access your Personal Information but only for the purposes of the bowel and cervical screening programs.
- As the contracted service provider for the National Cancer Screening Register, Telstra Health is authorised to access and use your Personal Information but only for the purposes of the bowel and cervical screening programs.
- Healthcare providers (including pathology providers and specialists) can access your information for the purposes of providing you healthcare in relation to cervical or bowel screening.
- State and territory health departments can access your Personal Information in the National 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 for the purposes of court or tribunal proceedings or a coronial inquiry or in accordance with an order of a court, tribunal or coroner.
9. Telstra Health operates the Register. Will my data be used for telemarketing by Telstra?
No. Telstra (including Telstra Health) are only permitted to use your Personal Information to support the National Cervical Screening Program and the National Bowel Cancer Screening Program.
10. 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.
11. 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:
- Phone: (02) 6289 1555 or freecall 1800 020 103
- Online: Online form - Feedback, Complaints or Enquiries
- Email: firstname.lastname@example.org
- Post: Department of Health
GPO Box 9848
CANBERRA ACT 2601
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.
12. Where can I get more information?
More answers to frequently asked questions relating to the National Register are available on the Department of Health’s website.
For more information on the Privacy Act and the Australian Privacy Principles, please refer to the Office of the Australian Information Commissioner website.
|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 Bowel Cancer Screening Program (NBCSP)||A joint bowel screening program of the Australian and state and territory Governments.|
National Cancer Screening Register
(NCSR, the National 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 or bowel 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 or National Bowel Cancer Screening Program), which can differ from their original or true name. For example, John Smith may choose to be identified as Jack Doe. The National Register will address all communications (including notifications sent to healthcare providers) to the Pseudonym.|
|Register / National Register||The National Cancer Screening Register|