Office of the Australian Information Commissioner
GPO Box 2999
Canberra Act 2601
The Population Health Research Network (PHRN) welcomes the publication of this Issues Paper and supports the open consultation and dialogue on Commonwealth government information policies. PHRN is pleased to provide the following submission.
The PHRN is responsible for the creation of a research infrastructure that will enable research using linked non-identifiable data from health data collections across all jurisdictions in Australia. The data linkage infrastructure will support the beneficial use of information held by governments for population based research to improve the health and wellbeing of Australians and enhance the effectiveness and efficiency of health services
The PHRN was established in 2009 with collaboration between Australian state and territory governments and their academic partners to develop national health data linkage infrastructure. It has received $30 million from the Australian Government Department of Innovation, Industry, Science and Research (DIISR) through the National Collaborative Research Infrastructure Strategy and the Education Investment Fund. State and territory governments and their academic partners have contributed a further $32 million in cash and in-kind.
The PHRN is working with states and territories to develop safe and secure infrastructure for the linkage of health and related data contained in statutory and administrative data collections, and for the provision of this data to data users for approved projects. PHRN is also developing the capacity to link data across state and territory boundaries.
The PHRN is governed by a Management Council including an independent Chair (Professor Brendon Kearney), a nominee from each state node, a nominee of the Commonwealth Department of Health and Ageing, and two researcher members. The PHRN Program Office is responsible for managing the governance of the Network and for developing the policies and procedures adopted in the Network including those applicable to access to information through the data linkage infrastructure.
The purpose of the PHRN is to support the conduct and quality of population level research which can be conducted without researchers having access to personal information. The protection of privacy is, therefore, central to the rationale and activities of the PHRN.
The PHRN strongly supports the view expressed in the Issues Paper that information held by governments is a national resource and that the value should be maximised by making it available for reuse.
Administrative health data held by governments can support health research which will improve health outcomes for all Australians and improve the efficiency and effectiveness of health service delivery. This potential is not yet being fully realised.
The beneficial use of administrative data for research must be balanced with the protection of individuals’ privacy. Government information policies must ensure that proper recognition is given to the protection of privacy interests. There is, however, a danger that concerns about privacy can lead to the refusal to allow the use of information. Good information policies should avoid defensive responses to privacy concerns and encourage sensible management of privacy risks.
The PHRN is supporting the development of data linkage capacity that can provide researchers with high quality non-identifiable data. The data linkage capacity enables the conduct of valuable research which could otherwise only be conducted using identifiable health information. The PHRN believes that government policies should recognise and support the development of infrastructure that can both maximise the beneficial use of information and maximise the protection of privacy.
Ensuring a coordinated approach
One of the obstacles to access to government data by researchers is the lack of consistent and transparent policies which reflect the view that the beneficial use of government information should be maximised. A particular difficulty is the lack of co-ordination across different levels of government, with widely differing approaches being adopted at Commonwealth and State/Territory levels.
The PHRN therefore supports the development of a co-ordinated approach across all levels of government.
The PHRN is concerned that information management policies developed by some government agencies in the past have not demonstrated understanding of the needs and methods of health researchers. If information management policies are to be effective in maximising the beneficial use of government information a close understanding of the needs and interests of potential users of the information is required.
The PHRN strongly recommends that policies are developed only after effective consultation with the potential users of the information.
Data linkage is now being used in a number of countries to enable the beneficial use of administrative data held by governments. In Australia, population-based data linkage was pioneered in Western Australia through the collaboration of the Department of Health WA and The University of WA. Australia is recognised internationally as a leader in data linkage. The PHRN draws on the growing national expertise and co-ordinates the continuing national development of best practice in data linkage.
The PHRN, therefore, strongly and actively supports keeping pace with international developments and innovations on public sector information.
The PHRN welcomes and supports the draft principles and makes the following comments.
The PHRN supports the principle which adopts a default position of open disclosure unless there are compelling reasons to the contrary.
Although this issues paper and the draft principles are primarily concerned with encouraging the open availability of information it should be recognised that guidance is also needed in relation to limited disclosure to particular users. Public disclosure of personal health information collected by governments will clearly be inappropriate and such information must be afforded rigorous privacy protection. However, limited and closely controlled disclosure may be appropriate in certain circumstances in order to maximise the beneficial use of the data.
The PHRN is of the view that the qualities and obligations outlined in the Open Access principle should also be applied to applications for limited access.
The effective implementation of the open access principle will require that the exceptions and criteria for departing from the principle are clearly articulated, transparent and justifiable.
The PHRN recommends that the principle include obligations on agencies to articulate the exceptions and criteria for departing from the principle.
The PHRN supports effective management of information held by Australian government agencies.
The PHRN is pleased to see recognition of the need to ensure appropriate engagement with stakeholders about access to information. In relation to access to health information for research it is particularly important that the views of researchers and the public are understood.
The PHRN recommends that both researchers and community representatives are represented on the proposed information governance body.
The PHRN supports robust information asset management frameworks.
The PHRN would like to emphasise the importance of clearly describing data using appropriate metadata. This makes data a much more useful resource.
The PHRN supports the principle that potential users should be readily able to discover the information an agency has published, and identify assets the agency holds but has not published.
The PHRN strongly supports the need for sound decision making processes.
The dot points outlined under this principle in the Issues Paper are essential for sound decision making. It is also important that decisions about access to information are transparent and are made using justifiable criteria.
State health departments have developed experience and expertise in decision making processes for applications for the use of administrative health information which could be useful to Australian government agencies in developing appropriate procedures.
The PHRN recommends that this principle include reference to establishing transparent and justifiable criteria for determining applications for release of information.
The PHRN supports the principle of transparent complaints processes.
The PHRN supports the principle of community engagement.
The development of the PHRN is based on strong consumer and community engagement. One of the principle advisory committees to the Management Council of the PHRN is the Ethics, Privacy and Consumer Engagement Advisory Group which includes two community members with experience in community engagement. The PHRN has an active program to conduct community forums to assist it to understand the perspectives of community members on the use of administrative health data and data linkage. These strategies are proving to be highly valuable in assisting in development of strong governance of the PHRN.
The PHRN, therefore, strongly supports the involvement of the community in all stages of policy design and in service delivery as appropriate.