Information Amendment (AIHW) Principle 2013

EXPLANATORY STATEMENT

Issued by the authority of the Minister for Mental Health and Ageing

Aged Care Act 1997

Information Amendment (AIHW) Principle 2013

The Aged Care Act 1997 (the Act) provides for the regulation and funding of aged care services. Persons who are approved under the Act to provide aged care services (approved providers) can be eligible to receive subsidy payments in respect of the care they provide to approved care recipients.

Subsection 96-1 of the Act allows the Minister to make Principles providing for various matters required or permitted by a Part or section of the Act. Among the Principles made under section 96-1 are the Information Principles 1997 (the Principles).

Part 6.2 of the Act deals with the use and disclosure of ‘protected information’. ‘Protected information’ as defined in section 86-1 of the Act includes personal information (as well as certain other types of information) acquired under or for the purposes of the Act. It is an offence for officers of the Department of Health and Ageing (the Department) to disclose such protected information except in certain specified circumstances. Under one such exception, the Secretary of the Department can disclose protected information to a person of a kind specified in the Principles for a purpose specified by the Secretary.

On 20 April 2012, the Australian Government announced the Living Longer Living Better package of aged care reform measures to be implemented over five years. Through one of the sub-measures ‘Supporting aged care research and evaluation’, the Australian Government will increase the availability, accessibility and coordination of aged care data for the community by establishing a centralised data clearing house at the Australian Institute of Health and Welfare (AIHW) from 1 July 2013.

This initiative will help to lay the foundation for improved knowledge about the characteristics and needs of older Australians needing care and support and the aged care system.

This measure was developed in recognition that there is limited publicly available data and evidence on aged care and on senior Australian populations, and in direct response to Recommendation 16.1 of the Productivity Commission’s Report “Caring for Older Australians” (August 2011).

The purpose of the Information Amendment (AIHW) Principle 2013 (Amending Principle) is to allow the disclosure of protected information under the Act to the AIHW to assist with its new role as a centralised data clearinghouse in relation to aged care, subject to the confidentiality and other information protection provisions under the Australian Institute of Health and Welfare Act 1987 (AIHW Act), including but not limited to section 29.

This is achieved by inserting a new paragraph 16.5(1)(f) in the Principles (the punctuation in paragraph 16.5(1)(e) is also being changed to enable the insertion of paragraph 16.5(1)(f)).

Under its legislated functions in section 5 of the AIHW Act, and in accordance with the confidentiality and information protection provisions under section 29 of the AIHW Act, the AIHW will use such information through four main streams of work:

1. publication of AIHW reports on ageing and aged care;
2. enabling researchers to have access to aged care information and statistics;
3. performing data linkage as part of their role as a data Integrating Authority; and
4. responding to requests for data from consumers.

The AIHW is best placed to undertake these additional functions as they have the appropriate protective legislative framework to ensure confidentiality and to minimise the risk of data misuse.

The AIHW is supported by strong privacy policies and processes underpinned by the AIHW Act and the Privacy Act 1988 (Privacy Act). In accordance with its privacy obligations, the AIHW does not release any information outside the Institute which could potentially identify an individual or organisation, except with the permission of the data provider or for research purposes that have been approved by its Ethics Committee and which do not contravene any conditions placed by data providers.

The Amending Principle is a legislative instrument for the purposes of the Legislative Instruments Act 2003.

Consultation

The Living Longer Living Better aged care reform package was developed in close consultation with the aged care sector, including consumers, industry and professional bodies.

Consultation on the proposed changes to the Act, and to delegated legislation, commenced in November 2012, with the public release of a paper providing an overview of the proposed legislative changes.

A video presentation detailing the changes was also made available through the Living Longer Living Better website, to assist with public understanding of the proposed changes. 

During November and December 2012, the Department also held briefing sessions in Melbourne, Sydney and Canberra on the proposed changes.

Stakeholders and the general community were able to provide written comments during a four-week period (21 November – 21 December 2012). The comments were made publicly available on the Living Longer Living Better website, unless the author requested otherwise. The Department received 54 submissions from members of the public, peak bodies and approved providers in response to the published overview of legislative amendments. Submissions received via the consultation on the overview of the proposed legislative changes were used to inform drafting of the amending bills and the delegated legislation.

In March and April 2013, the Department held industry briefing sessions across Australia to provide information and to explain, in detail, the proposed legislative changes included in the package of Bills introduced into Parliament on 13 March 2013. The briefing sessions also outlined changes to delegated legislation. For those who were unable to attend the briefings a copy of the presentation, supporting handouts, a detailed Questions and Answers document and an information video were made available on the Living Longer Living Better website.

The Department regularly consulted with the AIHW during the development of the Amending Principle.

An exposure draft of the Principle was made available on the Living Longer Living Better website on 24 May 2013.

Regulation Impact Statement

The Office of Best Practice Regulation has advised that no Regulation Impact Statement is required (OBPR ID 14911).

Commencement

The Amending Principle commences on 1 July 2013.

Statement of Compatibility with Human Rights

Prepared in accordance with Part 3 of the Human Rights (Parliamentary Scrutiny) Act 2011

Information Amendment (AIHW) Principle 2013

This Legislative Instrument is compatible with the human rights and freedoms recognised or declared in the international instruments listed in section 3 of the Human Rights (Parliamentary Scrutiny) Act 2011.

Overview of the Legislative Instrument

The purpose of the Information Amendment (AIHW) Principle 2013 (Amending Principle) is to authorise the Secretary of the Department to disclose protected information under the Aged Care Act 1997 (the Act) to the Australian Institute of Health and Welfare (AIHW) to assist it to perform its functions under the Australian Institute of Health and Welfare Act 1987 (the AIHW Act), subject to the confidentiality and information protection provisions under section 29 of the AIHW Act.  Protected information under the Act includes personal information.

Under section 86-3(j) of the Act, the Secretary can disclose protected information ‘to a person of a kind specified in the Information Principles, for the purposes specified in the Information Principles in relation to people of that kind’.  Subsection 16.5(1) of the Information Principles 1997 (the Principles) lists the kinds of people to whom protected information may be disclosed by the Secretary. The Principles are subordinate legislation made under s 96-1 of the Act.  Any amendment to those Principles (for example, the addition of a person to whom protected information can be disclosed) must be made by legislative instrument, disallowable by Parliament.

The Productivity Commission’s report “Caring for Older Australians” (August 2011) noted a significant lack of publicly available data and policy relevant evidence on aged care in Australia.  The Commission recognised that improved and timely access to aged care data will allow greater scrutiny of published findings and results, and better inform public debate and assessment of the aged care sector in this country.  The Commission therefore recommended (Recommendation 16.1) the establishment of a national centralised data clearing house for aged care data and supported the assignment of operational responsibility to an organisation such as the AIHW.

The AIHW is an independent statutory authority established under the AIHW Act and is accountable to the Australian Parliament through the Health and Ageing Portfolio.  In direct response to Recommendation 16.1, the Australian Government, through its 'Supporting aged care research and evaluation' measure - part of the Living Longer Living Better package of aged care reform – committed to increasing the availability, accessibility and coordination of aged care data by building on the existing role and functions of the AIHW.

The AIHW will use aged care data to fulfil its legislated functions as detailed in sections 5(1) and 5(1A) of the AIHW Act, through four main streams of work:

1. publication of de-identified information in AIHW reports on ageing and aged care;
2. enabling researchers to have access to aged care information and statistics;
3. performing data linkage as part of its role as an  Accredited Commonwealth Integrating Authority; and
4. responding to requests for data from consumers.

Human Rights Implications

Personal information (including health information) about individuals receiving care under the Act will be included in the information being disclosed to the AIHW by the Department.

The Amending Principle, therefore, engages Article 17 of the International of the Covenant on Civil and Political Rights (ICCPR) which sets out the right to protection from arbitrary or unlawful interference with privacy.  Article 17 of the ICCPR does not set out the reasons for which the guarantees in it may be limited.  However, limitations on privacy must be authorised by law and must not be arbitrary.  In order for the limitations not to be arbitrary, the interference must be reasonable, necessary and proportional to the end sought.  The collection, storage, use and disclosure of personal information to and by the AIHW will engage Article 17.

The Instrument also engages Article 22 of the Convention on the Rights of Persons with Disabilities (CRPD) which also states, in regard to privacy, that no person with disabilities shall be subjected to arbitrary or unlawful interference with his or her privacy and should have protection over their privacy on an equal basis with others.

Disclosure of personal information – Outcome

As noted above, the Australian Government has committed to increasing the availability, accessibility and coordination of aged care data by building on the existing role and functions of the AIHW.  To make it possible for the AIHW to link separate data sets to create new, larger and complete data sets for statistical and research purposes, it must have access to broad sets of aged care data that include personal information.

Personal information disclosed to AIHW will include personal details such as, but not limited to, name, date of birth, locality, sociodemographic and health characteristics, service provision details such as start dates and completion dates for provision of different types of services, and quantity of services provided.

Access to personal information is essential to avoid double counting, to facilitate longitudinal research and to increase the quality of data by being able to test the validity of data. In addition, giving the AIHW access to personal information on aged care recipients will provide other important benefits.  For example, this will allow the AIHW to identify particular sub-groups – such as aged care recipients under a certain age – to assist in researching and developing specific programs for their benefit.

Personal information is only ever released by the AIHW to researchers with the approval of the AIHW Ethics Committee and in accordance with the NHMRC National Statement, and all relevant legislation including the AIHW Act and the Privacy Act 1988 (the Privacy Act).

Rigorous research and evidence-based evaluation is critical to identifying the care needs of senior Australians and their carers and to identify ways for improving the appropriateness, effectiveness and efficiency of services.

Protection of Personal Information – Existing legislative protection

Personal information disclosed by the Department to the AIHW will be regulated by the Act, the AIHW Act and the Privacy Act.

The Act

Personal information collected under or for the purposes of the Act is ‘protected information’. Section 86-2 of the Act makes it an offence for officers of the Department to disclose protected information unless the section does not apply. Circumstances to which section 86-2 does not apply are set out in subsection 86-2(2). Paragraph 86-2(2)(e) of the Act, in effect, states that section 86-2 does not apply to conduct that is otherwise authorised under the Act or any other Act. 

The Amending Principle will amend the Information Principles to list the Chief Executive Officer of the AIHW as a person to whom the Secretary may disclose protected information for a specified purpose under paragraph 86-3(j) of the Act.  Therefore, the disclosure of protected information under that paragraph, by the Department, will be authorised by law.  In addition, how protected information can be dealt with once received by the AIHW will be limited by section 86-5 of the Act. That is, it must only be recorded, disclosed or used for the purpose for which it was disclosed by the Secretary.  Disclosure or use for any other purpose is an offence punishable by imprisonment for a term of two years.

The Privacy Act

Personal information is also protected by the provisions of the Privacy Act.  The Privacy Act applies to all personal information held by the Department and the AIHW.  The Privacy Act and associated Information Privacy Principles (IPPs) set the rules for the collection, storage, use and release of all personal information in the Commonwealth public sector. Among other things the IPPs:

• outline the various consent and advice requirements that apply when agencies collect personal information;
• require that all reasonable security measures are taken to protect personal information against loss and unauthorised access;
• prohibit the use of personal information other than for the purpose for which it was collected unless consent has been given for broader use; and
• prohibit the disclosure of personal information to any other person, body or agency, except in specified circumstances.

Consent

To be approved as a recipient of aged care under the Act, each individual (or a person acting on their behalf) must sign an application in the form of an ‘Aged Care Client Record’ (ACCR).  The assessment of the individual’s care needs contained in the ACCR is completed by a member of an Aged Care Assessment Team (ACAT).  The Privacy Notice in the ACCR informs the care recipient that the Department may give the information received from the ACAT to other people or agencies if permitted by the Act. The effect of the amendment will be to add the AIHW to the list of people and agencies covered by such permission.

With the large and growing number of individuals currently receiving aged care in Australia, it would not be practicable to seek from each such person specific consent to disclosure of personal information to the AIHW, especially given the high proportion of such individuals with degrees of cognitive impairment. 

When collecting, using and disclosing personal information about aged care recipients without their consent disclosed to it by the Department, the AIHW adheres to the Privacy Act.  These activities are only carried out with the approval of the AIHW Ethics Committee pursuant to the Privacy Act, the guidelines under section 95 of the Privacy Act, and the National Statement on Ethical Conduct in Human Research prepared by the National Health and Medical Research Council (NHMRC).  Further details on the AIHW Ethics Committee are provided below.

The AIHW Act

The AIHW Act restricts access of personal information through the confidentiality requirements imposed by section 29 of that Act.  Access to personal information held by the AIHW is restricted to:

• AIHW staff;
• staff of other bodies, including collaborating units, contracted to undertake specific functions on behalf of the AIHW; and
• anyone outside the Institute, such as a researcher (including people under the control of that person), who is given access to personal information with the approval of the AIHW Ethics Committee.

In addition, section 29 of the AIHW Act:

• prohibits individuals who acquire information, either arising from their employment or doing any act or thing under an arrangement with the Institute, from disclosing (or making a record of) information concerning a person where the disclosure is not made for the purposes of the AIHW Act.  The AIHW Ethics Committee has authority to allow the release of information protected by section 29 for research purposes;
• prevents individuals in receipt of information acquired under the AIHW Act from being required to divulge or communicate that information to a court; and
• provides for criminal penalties, including fines of up to $2,000 or imprisonment or both, for those who breach section 29.

The AIHW Act defines personal information as any information about individuals, organisations, bodies politic (where the body is the information provider) and deceased persons (where the deceased person is the information subject).

Employees are required to sign an Undertaking of Confidentiality when they begin employment with the AIHW.  In this Undertaking of Confidentiality staff:

• are advised of the confidentiality requirements imposed upon them by the AIHW Act and Privacy Act; and
• acknowledge that they may be subject to criminal penalties for breaching legislative requirements.

Contractors and any other third parties who may come into contact with personal information are also required to sign confidentiality undertakings.  Researchers who receive identifiable data after a successful Ethics Committee approval process also sign confidentiality undertakings.  Depending on the circumstances of a case, the AIHW may also require individuals who have received potentially identifiable data (that is, data that could potentially be linked to other sets and thus create identifiable data) to sign confidentiality undertakings or undertakings that they will not engage in data linkage with the provided information.

Freedom of Information (FOI) requests received by the AIHW are managed under the Freedom of Information Act 1982 (the FOI Act).  Section 38 of the FOI Act exempts information from disclosure where that information is protected by section 29 of the AIHW Act.  Consequently, the AIHW does not release personal information in response to FOI requests.

Protection of Personal Information - AIHW governance arrangements

AIHW Ethics Committee

The AIHW Ethics Committee is established under subsection 16(1) of the AIHW Act. The Australian Institute of Health and Welfare (Ethics Committee) Regulations 1987 set out the committee’s functions and role.  The regulations give the committee the power to make determinations on the ethical acceptability of AIHW activities, and activities engaged in by external parties under arrangements with the AIHW.  They also allow the committee to make decisions on the acceptability of the release of personal information to researchers for research purposes.

The committee reviews all projects, including internal proposals, involving the release of personal information, the creation of new data sets and data linkage.  In forming its opinion, it considers relevant NHMRC guidelines, such as the National Statement on Ethical Conduct in Human Research.  Before agreeing to the release of identifiable data, data linkage activities or establishment of new data sets, the Ethics Committee requires that those involved with a project – both within and external to the AIHW – sign a confidentiality undertaking.  This includes undertakings that:

• unit record files will not be matched, in whole or in part, with other information for the purposes of attempting to identify individuals, and that no other attempt to identify an individual will be made; and
• the person/organisation receiving the information will not disclose or release the information to any other person or organisation, except as statistical information that does not identify an individual.

AIHW policies, protocols and practices

The AIHW has a range of policies and protocols to ensure the confidentiality of its data. These include data custody and access policies, and protocols that limit access to data collections and protect identifiable data from being accessed or released inappropriately.

Identifying information will be stored separately in accordance with the third of the principles for the integration of Commonwealth data, governing the operations of accredited integrating authorities.  The file will be held by the Data Linkage Unit on its secure server separated from the main AIHW system, and accessed only by approved data linkage staff.  Staff have defined roles so that it is not possible for any person to see the identifiers together with any other personal information.  Any data linkage project will require the approval of the Department as well as the AIHW Ethics Committee.

AIHW data custody and governance

The AIHW maintains a central register of its data holdings.  Each data set has a data custodian (a senior staff member) who is responsible for authorising any access to data in accordance with the AIHW’s confidentiality and privacy requirements and any requirements of data providers.  Access is granted only when required by a staff member to carry out their duties and with the approval of the data custodian. Independent audits of AIHW data collections are conducted regularly to ensure that their integrity and security are maintained. These audit reports are considered by the AIHW Ethics Committee and the Audit and Finance Committee of the AIHW Board, and subsequently reported in summary form to the board.

All of the AIHW’s statistical outputs are subject to rigorous quality control to ensure that an individual or organisation is not likely to be able to be identified from the data.

Building on the existing role and functions of the AIHW is the most efficient approach to increase the availability, accessibility and coordination of aged care data for the community, with the existing legislative framework and governance arrangements providing the necessary safeguards for data confidentiality and potential data misuse.

Conclusion

The instrument is compatible with human rights because the interference to the privacy of individuals receiving care under the Act is reasonable, necessary and proportional to the end sought.  Parliament, through the Act, has already endorsed this method for adding additional individuals or bodies to the list of those to whom protected information under the Act can be disclosed.  Rigorous research and evidence-based evaluation is critical to identifying the support and care needs of senior Australians and their carers and for ways of improving the appropriateness, effectiveness and efficiency of services.  The need for improved and timely access to aged care data to allow greater scrutiny of published findings and results, and better inform public debate and assessment of the sector was also recognised by the Productivity Commission.  The AIHW has in place the appropriate protective legislative framework to ensure that confidentiality risks, and concerns about potential data misuse, are managed and mitigated.

The Hon Mark Butler MP,

Minister for Mental Health and Ageing