WA's Chief Scientist Professor, Peter Klinken AC chaired the group, which also included Government Chief Information Officer, Giles Nunis, and Founding Director of Telethon Kids Institute, Professor Fiona Stanley AC, with additional expert advice provided by Professors Bruce Armstrong and Louisa Jorm.
The report’s findings and recommendations have been formed through a rigorous process of consultation. Firstly, through a call for submissions from Government, academia, research institutes and the not-for-profit sector. Secondly, via a series of detailed discussions with various stakeholders across these sectors. Thirdly, through engagement with the Director General of the Department of Health (DoH), Dr. David Russell-Weisz and various staff members from the Data Linkage Branch (DLB) of the DoH.
Data linkage has been used for health and medical research in WA since the 1970s. The WA Data Linkage System (WADLS) was formally established in 1995 as a collaboration between the DoH, University of Western Australia (UWA), Telethon Kids Institute (then the Telethon Institute for Child Health Research) and Curtin University. In 1997 the DoH took over as majority funder and the Data Linkage Unit (later renamed the Data Linkage Branch or DLB) was established to administer the WADLS. The WADLS is accessed predominantly by researchers aiming to identify links between disease and population data.
The success of linking health data has attracted more than AU$136 million in research and related funding into the State from external sources. It has also supported over 400 studies, some of which relate to the improvement of mental health legislation, reducing criminal recidivism and changing vaccination schedules for children in the Kimberley region. However, there are concerns that the current method of delivering data linkage services by the DLB is not able to cope with a whole-of-Government approach. According to the review, there is evidence to suggest that the current data linkage service is struggling with demand across the health sector, resulting in increased costs and longer wait times for users.
The review sought to explore these concerns so that WA’s data linkage capability is able to maintain its current high standards and to evaluate the need to develop a whole-of-Government model.
The review produced 23 recommendations to improve and bolster the current data linkage service; and deliver a whole-of-government data linkage model. A comprehensive report was finalised late last year.
The report includes recommendations to improve the State's current data linkage service in the short term, and develop a whole-of-government model in the future which builds on the State's existing strengths in population health data linkage and research.
The report's recommendations will feed into a number of the Government's current reform initiatives, including a commitment to State privacy legislation and the Service Priority Review.
In the short-term, the review sees value in establishing a Steering Committee that provides strategic leadership on data linkage across Government. It is recommended that the Steering Committee should oversee the implementation of recommendations from the review report.
The review says that the Office of the Government Chief Information Officer (OGCIO) should develop a set of whole-of-government standards or guidelines for the collection of data across Government, and facilitate training and support to public sector employees. All state government agencies should be required to follow these guidelines and make appropriate resources available. The State Government should also improve its engagement with the not-for-profit sector to enable the sector to participate better in data linkage and analysis and it should increase funding to the DLB.
The DLB should be more open and transparent in all its dealings with stakeholders and clients, including about its policies, decision-making, timelines and charges. To support this, the DoH should establish a group (e.g. a working group, board or committee), similar to the Data Linkage Advisory Board, but with consideration to expanded membership. The review recommends that the DLB develop an automated online linkage project application and tracking system. Up-to-date information on application status, milestones, actions required and anticipated completion dates should be included in this system and be fully available to applicants.
The review found that even though WA does not have privacy legislation, this has not impeded the current services provided by the DLB, with no breaches of privacy to date. Nevertheless, other states and countries have been hesitant to share data with WA due to the lack of privacy legislation. With this concern, coupled with the requirement for a whole-of-government model where data from numerous Government agencies can be accessed and linked, the review finds a strong need for privacy legislation. The review has, therefore, recommended that the state government draft privacy legislation and consider the formulation of data sharing legislation. This is a medium-term recommendation.
State government agencies are encouraged to explore the feasibility of accessing data collected by third parties e.g. service providers contracted by Government and other private sector organisations. The review says that care would need to be taken if considering outsourcing data collection to the private sector, particularly with respect to ensuring data quality, value for money, and full and continued access to the data by Government.
The review also asks for state Government agencies to invest in data analytics capabilities, and associated training courses for public sector staff to be developed.
In the longer term the review concluded that the DoH, the Department of the Premier and Cabinet and the OGCIO should seek approval from Cabinet to draft legislation to create a Statutory Body that would take over the responsibility for providing future data linkage services for the whole-of-Government. This body should be overseen by a Governing Board, which also includes members who are independent of Government and reflect wider community interests in data linkage.
In conjunction with establishing the data linkage Statutory Body, a Human Research Ethics Committee with specialist expertise in data linkage should be created. The Human Research Ethics Committee should have responsibility for the privacy and ethics approval processes for data linkage, whether or not done for research purposes, and be compliant with the National Statement on Ethical Conduct in Human Research.
At the national level in Australia, the Productivity Commission’s Public Inquiry into Data Availability and Use, identified a number of draft, nationally-consistent, recommendations for improving the availability and use of public and private sector data. A Taskforce has been established in the Department of the Prime Minister and Cabinet to lead the Government response to the inquiry. The federal government has launched an initiative called the Data Integration Partnership for Australia (DIPA) to enable faster, cheaper and more secure integration of data to support better decisions by policy makers. A Data Taskforce led by the Australian Computer Society (ACS), and the NSW Data Analytics Centre (DAC) is working to address the overarching challenge of developing privacy preserving frameworks which support automated data sharing to facilitate smart services creation and deployment. The Australian Department of Health has initiated a public consultation for the development of a framework for the secondary use of My Health Record (MyHR) systems data in Australia.
Read the complete report here.