Privacy and the National Cancer Screening Register

Your patients may have asked you questions about the National Cancer Screening Register (the Register). To assist you with answering questions about privacy and some of the functions of the Register, we have prepared some answers to Frequently Asked Questions and provided reference information.

Privacy

There are strict rules around access to the information, and how the information is stored on the Register which ensure it is used only for intended purposes.

The Privacy Policy of November 2017 has been updated and is here.

A set of Frequently Asked Questions relating to privacy has been prepared and is also now available here.

Information collected by the Register

Personal information held by the Register includes a person’s name, address, contact details, date of birth, sex, Medicare number or Department of Veterans’ Affairs (DVA) number and individual healthcare identifier. This information is collected and used by the Register in compliance with the Privacy Act 1988 and the National Cancer Screening Register Act 2016, and are required to provide authentication credentials upon access.

The Register holds individuals’ cervical screening test histories and cervical test results, Medicare claim information, details of healthcare providers (including pathology providers) involved in an individual’s cervical screening test, and any request an individual has made about their participation in the Register.

It may also collect information about a participant’s status as an Aboriginal and/or Torres Strait Islander, country of origin and preferred language to assist in improving the delivery of cancer screening programs. Participants do not have to disclose this information and their access to cervical screening will not be affected if they choose not to.

Access to personal information

Program participants control who is allowed to access their personal information on the Register and only authorised and authenticated users may access the system.

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

Information is stored within Australia in secure data storage facilities. Legislation requires notification to the Australian Information Commissioner if there has been a data breach.

Invitation and reminder functions

The Register will issue invitations and send reminders to participants for cervical screening. One of its key roles is to provide a ‘safety net’ for individuals whose cervical screening test results indicate a need for further investigation and/or treatment, and who have not attended for further testing, by prompting them to have follow up tests.

Healthcare providers can use the Register to:

• Check a patient’s screening history and reminders.
• Check and update a patient’s personal details.
• Manage a patient’s participation in the National Cervical Screening Program.

For more information, please call the Register on 1800 627 701.

Workshops to promote participation from Aboriginal and/or Torres Strait Islander women in the NCSP

Cervical cancer incidence and mortality are higher among Aboriginal and/or Torres Strait Islander women compared to non-Indigenous women. In recognising that there are cultural, linguistic and other barriers to cervical screening for Indigenous women, the Australian Government Department of Health has worked in partnership with Benchmarque, a registered training organisation, to develop training workshops specifically targeted at healthcare providers who engage with Aboriginal and/or Torres Strait Islander women.

Around 55 workshops (free of charge to workshop participants) will be delivered across Australia in 2018 and 2019. The aim of these workshops is to educate healthcare providers on the National Cervical Screening Program (NCSP) and promote the benefits of regular cervical screening to Aboriginal and/or Torres Strait Islander women. 

Please see below the schedule for upcoming workshops. 

To register, or for more information on the workshops, please contact The Benchmarque Group on telephone 1300 855 568 or by email at courses@benchmarquegroup.com.au

Resources on cervical, breast and bowel cancer screening for people with an intellectual disability

Family Planning NSW have been working with the Cancer Institute NSW to develop online, hard copy and video resources to encourage and support people with an intellectual disability to participate in cervical, breast and bowel cancer screening.

The Just Checking website provides a range of resources designed by and for people with an intellectual disability: www.fpnsw.org.au/justchecking. There are also resources for support workers, parents and carers to better support people with an intellectual disability to access cancer screening programs.

Healthcare providers are encouraged to download and/or order the resources in preparation for appointments with their patients who have an intellectual disability to ensure all people have access to this information.

Sharing the NCSP newsletter

Each month a new link will be provided so you can share an electronic copy of the NCSP newsletter with other interested stakeholders.The links to the previous NCSP newsletters are below:

• January 2018
• March 2018
• April 2018
• May 2018
• June 2018
• July 2018
• August 2018
• September 2018

To subscribe to this newsletter please email NCSPComms@health.gov.au with your name, email and organisation

Links for further information 

• The Analysis of Cancer Outcomes and Screening Behaviour for National Cancer Screening Programs in Australia by the Australian Institute of Health and Welfare is available for download: https://www.aihw.gov.au/reports/can/115/cancer-outcomes-screening-behaviour-programs/contents/table-of-contents
• The 2018 Women’s Health Survey is available for download: https://jeanhailes.org.au/womens-health-survey-2018 
• The Australian Institute of Health and Welfare report Cervical Cancer Screening in Australia 2018 is available for download: https://www.aihw.gov.au/reports/cancer-screening/cervical-screening-in-australia-2018/contents/table-of-contents
• Healthcare providers are recommended to follow the National Cervical Screening Program: Guidelines for the management of screen-detected abnormalities, screening in specific populations and investigation of abnormal vaginal bleeding and the Pathology Test Guide for Cervical and Vaginal Testing
• Colposcopists must complete and submit the Colposcopy and treatment form and information about the mandatory notification of cervical screening information within 14 days of the colposcopy episode
• Toolkit for engaging Under-screened and Never-screened women in the National Cervical Screening Program
• A subset of the clinical pathways is included in the Understanding the National Cervical Screening Program Management Pathway: A Guide for Healthcare Providers
• Resources and education materials about the National Cervical Screening Program can be accessed on the website and ordered free of charge. This includes resources to help participants understand their cervical screening results, posters to promote the National Cervical Screening Program and factsheets on self-collection
• National Cervical Screening Program website
• National Cancer Screening Register website
• Factsheet on the new pathology Medicare items for tests under the National Cervical Screening Program