NATIONAL OCCUPATIONAL RESPIRATORY DISEASE REGISTRY (CONSEQUENTIAL AMENDMENTS) BILL 2023 Explanatory Memorandum

Commonwealth of Australia Explanatory Memoranda

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NATIONAL OCCUPATIONAL RESPIRATORY DISEASE REGISTRY (CONSEQUENTIAL AMENDMENTS) BILL 2023

2022-2023 THE PARLIAMENT OF THE COMMONWEALTH OF AUSTRALIA SENATE NATIONAL OCCUPATIONAL RESPIRATORY DISEASE REGISTRY BILL 2023 NATIONAL OCCUPATIONAL RESPIRATORY DISEASE REGISTRY BILL 2023 (CONSEQUENTIAL AMENDMENTS) BILL 2023 ADDENDUM TO THE EXPLANATORY MEMORANDUM (Circulated by authority of the Assistant Minister for Health the Hon Ged Kearney)

NATIONAL OCCUPATIONAL RESPIRATORY DISEASE REGISTRY BILL 2023 NATIONAL OCCUPATIONAL RESPIRATORY DISEASE REGISTRY BILL 2023 (CONSEQUENTIAL AMENDMENTS) BILL 2023 This addendum responds to: • concerns raised by the Parliamentary Joint Committee on Human Rights in the Human Rights Scrutiny Report 9 of 2023, dated 6 September 2023; and • concerns raised by the Senate Standing Committee for the Scrutiny of Bills (Scrutiny of Bills Committee) in Scrutiny Digest 10 of 2023 dated 6 September 2023; and • matters raised by the Australian Greens as a part of the consideration of the National Occupational Respiratory Disease Registry Bill 2023 and National Occupational Respiratory Disease Registry (Consequential Amendments) Bill 2023 by the Community Affairs legislation Committee.

SCHEDULE 1 - Amendments National Occupational Respiratory Disease Registry Bill 2023 Statement of Compatibility with Human rights Replace paragraphs 4 and 5 under the heading "Protection of privacy and reputation" of the Explanatory Memorandum with the following paragraphs: The minimum notification information must include information identifying the individual diagnosed with an occupational respiratory disease, the respiratory disease and the State or Territory in which the last and main exposures were believed to have occurred. The minimum notification information that must be reported will also include sufficient information to allow for State and Territory work health safety agencies to contact patients to seek additional information, if necessary, to ensure they can appropriately assess the risks of occupational exposure. For the remaining information set out in the minimum notification, a medical practitioner may indicate 'not stated or unknown' for several mandatory fields, recognising the patient may be unable or unwilling to provide this detail. These fields include the individual's lung function, the industry, occupation and main job task where the exposures are believed to have occurred. The notification of any other information (e.g. additional notification information and the notification of information about non-prescribed occupational respiratory diseases) will require the individual's consent. In determining minimum and additional notification information, the Commonwealth Chief Medical Officer will take into consideration: • the potential reporting burden on prescribed medical practitioners and their willingness to report non-prescribed occupational respiratory diseases and additional notification information • the resourcing needs to implement changes to the functionality of the National Registry • the outcomes of any consultations undertaken in compliance with s 17 of the Legislation Act 2003 (which requires appropriate and reasonably practical consultation). The mandatory reporting of minimum notification information is necessary to allow an accurate record of the incidence of occupational respiratory diseases in Australia and to assist in preventing further worker exposure to respiratory disease-causing agents. This additional material clarifies the extent to which a patient or practitioner may choose not to disclose minimum notification information to the National Registry. In doing so, it responds to concerns raised by the Parliamentary Joint Committee on Human Rights in Report 9 of 2023 dated 6 September 2023. This material also addresses concerns raised by the Senate Standing Committee for the Scrutiny of Bills in Scrutiny Digest 10 of 2023 dated 6 September 2023 by clarifying the types of 2

considerations to be made by the Commonwealth Chief Medical Officer in determining minimum and additional notification information. Immediately after paragraph 13 of the explanatory material under the heading "Protection of privacy and reputation" on page 6 of the Explanatory Memorandum, insert the following new paragraph: The restrictions on the disclosure of workplace identifying information and personal information to researchers are needed to balance the protection of the privacy of individuals while ensuring researchers are able to use the kinds of information from the National Registry needed to inform research into the causes, incidence, prevalence, nature and extent of occupational respiratory diseases. This additional material clarifies the ability for researchers to access data from the National Registry while emphasising the need to protect an individuals' right to privacy. In doing so, it addresses concerns that researchers will not be provided with sufficient access to National Registry data. Replace paragraph 17 of the explanatory material under the heading "Protection of privacy and reputation" on page 7 of the Explanatory Memorandum: Additional limited authorisations are also included in clause 26 of the Bill. Clause 26(1) of the Bill requires the Commonwealth Chief Medical Officer to publish annual reports detailing the number of notifications made of prescribed and non- prescribed occupational respiratory diseases in the preceding 12 month period. Clause 26(2) enables the Commonwealth Chief Medical Officer to prepare and disseminate statistical reports relating to information from the National Registry of a kind prescribed in the rules. Clause 26(3) provides a broader authorisation, which allows the Commonwealth Chief Medical Officer to publish reports drawing from information from the National Registry. These reports may include information other than statistical information. This authorisation is intended to facilitate the publication of more detailed reports relating to disease-causing agents, industries, occupations and job tasks. Subclause 26(4) requires the Commonwealth Chief Medical Officer to take reasonable steps to ensure any information made available under clause 26 has been de-identified. This additional material clarifies the information that will be provided by the Chief Medical Officer in their annual reporting on the National Registry. In doing so, it responds to concerns raised there would be insufficient public reporting on National Registry data. Division 3--Notifying information for the National Registry Immediately after paragraph 2 of the explanatory material under heading Clause 14 - "Notifying information about prescribed occupational respiratory diseases-- diagnosing prescribed medical practitioner", on page 16 of the Explanatory Memorandum, insert the following new paragraph: The ability to quickly mandate the notification of a disease will ensure information, such as incidence, exposure, task, job and occupation, will be 3

made available to work, health and safety agencies to facilitate early intervention and effective response to emerging occupational respiratory disease. This material addresses concerns raised by the Senate Standing Committee for the Scrutiny of Bills in Scrutiny Digest 10 of 2023 dated 6 September 2023 by clarifying why it is necessary and appropriate to leave some information to delegated legislation. Division 4 - Variation of information in the Registry Part 3 - Dealing with information in the National Registry Immediately after paragraph 15 of the explanatory material under the heading "Clause 21 - Authorised dealings with information" on page 22 of the Explanatory Memorandum, insert the following new paragraph: These protections are key to ensuring individuals' privacy and commercial interests are not compromised, while at the same time enabling the use of the kinds of information needed to inform research into the causes, incidence, prevalence, nature and extent occupational respiratory diseases. This additional material clarifies the ability for researchers to access data from the National Registry while emphasising the need to protect individuals' right to privacy. In doing so, it addresses concerns researchers will not be provided with sufficient access to National Registry data. Replace paragraph 7 of the explanatory material under the heading "Clause 26 - Publication of statistical information" on page 25 of the Explanatory Memorandum: Subclause 26(3) provides the Commonwealth Chief Medical Officer may also publish other reports, containing statistical and other information included in the National Registry. The Bill allows the Commonwealth Chief Medical Officer to prescribe in the rules the scope of information to which these reports will relate. This may include information relating to disease-causing agents, industries, occupations and job tasks associated with diagnoses of occupational respiratory diseases. This additional material clarifies the information that will be provided by the Chief Medical Officer in the annual reporting on the National Registry. In doing so, it responds to concerns raised there would be insufficient public reporting on National Registry data. 4

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