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Wednesday, 31 August 2016
Page: 99

Ms LEY (FarrerMinister for Sport and Minister for Health and Aged Care) (12:26): I move:

That this bill be now read a second time.

The National Cancer Screening Register Bill 2016creates a new legislative framework for the establishment and ongoing management of cancer-screening registers.

The need for this bill arose from the coalition's federal budget 2015-16 announcement to improve cancer detection, treatment and prevention through innovative measures that ensure Australia remains a world leader in the field.

Australia continues to have one of the highest rates of bowel cancer in the world and this government is committed to improving health outcomes in this area through early detection. Bowel cancer is the second most common cause of cancer deaths in Australia with approximately 4,000 Australians dying each year—that is around 80 deaths each week. The risk of bowel cancer increases from the age of 50, yet if detected and managed early, nine out of 10 cases can be successfully treated. Currently, fewer than 40 per cent of bowel cancers are detected early.

In a bid to fast-track the program and save more lives, this government also committed to delivering an expanded National Bowel Cancer Screening Program. This program expansion means Australians aged 50 to 74 years will receive a free, at-home, bowel cancer screening kit every two years by 2020, instead of 2034. That is 14 years earlier than was planned under the previous government. Evidence from clinical trials has shown that biennial screening using faecal occult blood testing can prevent 300 to 500 deaths per year.

Fast-tracking the bowel-screening program will also take the pressure off our health system by providing early detection that enables simpler treatment and better survival. Advanced bowel cancer treatment is estimated to cost our health system $66,000 per case compared to $2,000 to remove precancerous polyps.

Approval has been given for the renewal of the National Cervical Screening Program, which will increase cervical cancer survival rates through an evidence-based pathway backed by research undertaken by the Medical Services Advisory Committee.

The Australian government is serious about increasing the number of Australians that participate in cancer screening as part of the fight against cancer. Cervical cancer claims the lives of 250 women annually and yet it is one of the most preventable cancers. Currently 80 per cent of women diagnosed with cervical cancer have not been screened or have not had regular screening.

The changes to the National Cervical Screening Program from 1 May 2017 will introduce a more effective cervical cancer test, the human papillomavirus (HPV) test, to replace the current two-yearly Pap test. The new test detects HPV infection—which is almost always the first step in developing cervical cancer—before abnormal cell changes occur. As the HPV test will only be required every five years, the number of invasive procedures during a woman's lifetime will reduce from 26 to just nine.

The HPV test will be available on the Medicare Benefits Schedule from 1 May 2017.

Since its inception in 1991, the National Cervical Screening Program has effectively halved the mortality and morbidity of cervical cancer. Through the rollout of the new screening pathway, current estimates suggest that there will be a further decrease in the mortality and morbidity by at least 15 per cent.

Importantly, key activities will also be delivered to support the renewed National Cervical Screening Program, including workforce change strategies, clinical management guidelines, a quality management framework and a communication strategy.

Australia seeks to connect its health system to deliver better, safer, efficient care now and into the future. With the recent investments in cancer prevention and detection, it is important that the organised approach to population-based screening is underpinned by a consistent and contemporary national register to monitor and support timely activity. There are significant efficiencies that can be gained by establishing the National Cancer Screening Register that will not only support both the renewal of the National Cervical Screening Program and the expansion of the National Bowel Cancer Screening Program, but potentially other cancer-screening programs in the future. By 2020, the National Bowel Cancer Screening Program will be inviting about four million Australians to screen each year and could detect approximately 3,500 potential bowel cancers each year.

The bill provides a principles-based legislative framework to support the government's policy objectives of supporting Australia's health system to meet current and future challenges. The bill lays the foundation for future work to move towards a national integrated system that captures and reports on individuals' screening test results and the results of relevant follow-up procedures, up to and including the diagnosis with cancer or a precursor to cancer.

The bill provides for the establishment of the register and authorises the collection, and use of information for the purposes of the register and specified other purposes, such as providing healthcare to an individual.

The government is keenly aware that the register will hold sensitive information. The bill protects the personal information of individuals by prohibiting the collection, use or disclosure of personal information in the register outside of the circumstances set out in the bill. The limited authorisations in the bill ensure that personal information is only collected, recorded, used or disclosed to or from the register for specific purposes. The bill also creates an offence arising from the unauthorised collection, use or disclosure of personal information contained in the register.

Establishing the register involves large-scale data migration and merging to create a national database of records for cancer-screening information. The bill will allow Medicare enrolment and claims data and healthcare identifiers for individuals and healthcare providers to be collected by the register for the initial system build as well as on an ongoing basis, all appropriately protected by privacy and secrecy provisions.

The bill authorises collection of HPV vaccination status from the HPV register so that individuals' cervical screening information in the register will also include their HPV vaccination status.

Currently there are eight separate state and territory cervical screening registers and an outdated, paper-based bowel-screening register which has created a fragmented system. The bill removes obstacles associated with migrating state and territory cervical screening data by providing the authority to transfer data to the register. This is important to ensure Australians do not miss vital cancer-screening checks that could save their lives.

However, the bill also appropriately includes provisions allowing individuals to opt off participation in the register according to the individual's preference, in keeping with the fundamental privacy tenet of giving people the right to exercise control over how their identity is used and disclosed and to make choices about what works for them.

The bill includes mandatory reporting of cancer-screening information of a prescribed type. Mandatory reporting obligations will ensure routine, timely collection of information which is crucial for the screening processes and follow-up clinical pathways, particularly where there is an adverse screening result. The details of the reporting obligations, including who is obliged to report and what information is to be reported in what time frames, will be prescribed in the rules.

The National Cancer Screening Register will be on the cutting edge of innovation. It will provide an ICT platform incorporating themes of accessibility and usability capable of integrating with the My Health Record system and Health's electronic data warehouse with the ability to be expanded to support other cancer-screening programs in the future. The register will be able to inter-operate with clinical information systems to enable healthcare providers to provide data to the register easily and receive information back easily to better inform clinical decision-making.

The register will support the cancer-screening pathways by facilitating invitations, sending out test kits and recall of participants where they agree. It will enable improved software integration with general practice, specialists and pathology laboratories. It will improve quality and accessibility of data, as well as the timeliness of data capture and data matching. The register's prime focus is on maintaining a complete and consolidated source of screening information for participating individuals. Over time, it will help increase program participation rates and the effectiveness of the screening programs and support the health system by informing policy for the national screening programs and service delivery at the local level.

This government takes privacy seriously and is committed to protecting the privacy of personal information—especially in this technological and information age. The bill establishes a robust framework for managing the data collected by the register, including protections and penalties against unauthorised collection, use and disclosure.

It should be noted that, apart from the protections and restrictions in the legislation, the register operator will comply with a strict services agreement to build and operate the register in accordance with data security requirements.

The register will be built in accordance with Commonwealth cybersecurity guidelines for new ICT infrastructure, taking into consideration sensitivity and classification of the information it stores and ensuring compliance with all legal and legislative requirements applicable to the processing of and access to health data including the Privacy Act 1988. The register will have extensive cybersecurity protections so that it is not vulnerable to external threats. It will be subject to IT security compliance activities in accordance with government policies.

The register will be operated from within Australia and all data will be stored onshore in secure data storage facilities that meet government requirements for storage and management of personal information. The Commonwealth will be the custodian of data in the register.

With the passage of the legislation, the register will commence operation on 20 March 2017 to support the National Bowel Cancer Screening Program, and from 1 May 2017 it will support the renewed National Cervical Screening Program. Passage of the bill is required by September 2016 to enable data migration of state and territory cervical screening registers to the register, followed by data cleansing and system testing in time for a fully operational national register by this date.

A number of amendments to other legislation are required once the bill receives royal assent to enable certain information to be provided to the register, such as Medicare data and HPV vaccination status. These are described in the National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016.

This bill will serve to benefit the health of Australians through more efficient cervical and bowel screening pathways—made possible by the establishment of a national register. It will assist general practitioners and healthcare providers in their clinical decision-making and contribute to cancer detection, treatment and prevention.

This bill is also another example of the Turnbull government's commitment to ensuring all Australians have access to affordable, universal healthcare.

I commend the bill to the House.

Debate adjourned.