The Western Australian government has been advised to a build a whole-of-government data linkage system by building on the successful efforts that have been carried out by the state’s Department of Health for about 20 years.
WA’s chief scientist Peter Klinken, government CIO Giles Nunis and University of Western Australia child health professor Fiona Stanley were commissioned to review data linkage by the former government in May last year.
The new government seems quite happy with the 23 detailed recommendations it received earlier this month; it agrees it should enact the state’s first privacy legislation and the report will “feed into” its public service reform process, according to a statement.
Science Minister Dave Kelly said “a better understanding, sharing and appropriate use of data across government” would be a key goal of those reforms.
“Government agencies collect a multitude of data in the course of their daily operations and it is imperative we maximise this valuable resource,” Kelly said in a statement.
“Linking datasets is a highly valuable tool for research and analysis across policy, legislation, investment, prevention and intervention measures. I endorse the views expressed in the report that the state’s current data linkage system is a significant asset and the need for legislation that better enables the sharing of data whilst also ensuring that privacy is protected.”
The Prime Minister’s department recently used WA Health’s pioneering data linkage program as an example of what it wants to achieve with its own data integration plans, and the state’s new Health Minister Roger Cook agrees the system is a valuable asset and says an upgrade is already on the cards.
“With some datasets spanning 45 years, the depth and breadth of the data linked through the system is almost unrivalled worldwide,” said Cook.
“A number of this report’s recommendations align with those of an internal review recently conducted by the Department of Health, and I am pleased to say these recommendations are already being progressed with a view to improving the provision of linked data to approved users and projects.”
In the west, government and population health researchers have been working together for quite some time. “WA has a long and highly successful history of linking data, dating back to the 1970s,” notes the report. “Data were linked for research purposes in an attempt to identify trends and gain insights into human disease.”
These early efforts were followed by the WA Data Linkage System, a joint venture between the WA Health, Curtin University, the University of Western Australia and Telethon Kids Institute, which was founded by panel member Prof Stanley. The report is full of praise for the system and the data linkage branch of the Health Department which manages it. The authors even claim it is “internationally-renowned” and “the envy of the rest of the country” – and in the context of the public health field, at least, this is no doubt the case.
The panel credits the WADLS with pulling over $136 million “in research and related funding” into WA from external sources over the years, and supporting over 400 studies that have informed various government policies.
“Linking health data has been so successful that a growing demand to link non-health data has emerged,” they report, based on 41 submissions, one information session, consultation with health bureaucrats and other “detailed discussions with various stakeholders”.
“This includes data relating to the justice and corrections system, disability services, community development, as well as training and education.”
However, current arrangements are inadequate for a whole-of-government expansion, the report argues. It says the WADLS is already struggling to meet demand, resulting in “increased costs and longer wait times for users” – this is likely covered in the department’s internal review mentioned by the Health Minister.
The review also heard there were “critical concerns” about the governance, timeliness, transparency and costs of the services provided to public health researchers.
A staged plan
The report commends the WA Health data linkage branch for “its ability to deliver a data linkage service with no breaches of privacy over several decades” – although privacy risks like the spectre of re-identification attacks have increased markedly in recent years with social and technological developments. Public fears about data have grown in turn.
While the panel heard the health branch had suffered no data breaches despite the state having no privacy law, the lack of one still means other states and countries are “hesitant” to share data with WA, according to the report.
The recommendations set out a rough timeline to build up a whole-of-government data linkage capability. Some are addressed to WA Health in the short and the medium term, and others are short, medium and long-term actions addressed to multiple agencies and office holders.
For starters, the department’s data linkage branch should become “more open and transparent in all its dealings with stakeholders and clients” and publish more information.
In the short term, the panel says the government should set up a data linkage steering committee to play a “strategic leadership” role and invite not-for-profit groups to play a larger role, including in data collection. Eventually, it recommends a statutory body overseen by an independent board whose members “reflect wider community interests” in data linkage.
One of the panel’s members, the government CIO Nunis, has a “critical role” to play in making sure agencies collect and manage data in a consistent way through new standards or guidelines, according to the report, which also recommended more public service capability building.
“It is essential that Government employees are supported through training and awareness initiatives relating to proper data management practices, and that the benefits of data linkage are communicated effectively [within government].”
The review also recommended the government establish an ethics committee with “responsibility for the privacy and ethics approvals processes relating to data linkage, whether for research purposes or not” and aligned with the National Statement on Ethical Conduct in Human Research.
The review panel argues WA Health’s existing human research ethics committee should be “flexible in its scope and operation” around data projects, and should handle all privacy and ethical issues; the report explicitly states that departmental data custodians should not have this role.
Meanwhile, across the nation
The nation’s first of this kind of whole-of-government data sharing law was passed in South Australia in December last year and came into effect on 30 May this year.
As such, the South Australian government is the furthest along with its data sharing trial run, which has focused on providing front-line workers in child protection with greater information about potential risks they or others would face prior to a site visit.
While limited in scope at this stage, state officials have prioritised the security of the linked data to ensure only the minimum number of people can see the ‘bigger picture’ of a family that mixing data sources can provide. The individual front line workers are not among those people with direct access to the family’s full timeline of events and interaction, but are informed only if there is something that could affect their safety. The information involve includes interactions relating to other family members, such as a parent recently released from custody, or a call to police from a sibling.
The initial trial started as a voluntary call-out to agencies and includes the Department of the Premier and Cabinet, Attorney General’s, Child Protection, Community Services, Correctional Services, and other related agencies.
The Victorian government has introduced data sharing legislation to Parliament, with the aim of linking up the “vast quantities of data” collected by all of its agencies so that “insights about what works and why” can be applied to health policy and other “pressing community concerns” like family violence, according to Special Minister of State Gavin Jennings.
The minister’s office said whole-of-government data sharing would be used to improve service planning and design, and collaboration between agencies. If passed, the proposed data sharing act will create the legal framework to allow that to happen and establish the state’s chief data officer as a statutory officer. According to Jennings:
“The Bill also includes strong safeguards and oversight to protect personal data and information, including independent oversight by Victoria’s privacy regulators, mandatory reporting of any potential breaches, and new offences for unauthorised access, use or disclosure.”
The Victorian minister claims data sharing between agencies will enable the government to better protect survivors of family violence in particular.
New South Wales
In Sydney, the New South Wales government’s plan to build a secure “data marketplace” for government agencies, companies and non-government organisations to share information is moving ahead. It has struck a deal to use local company Data Republic’s “Senate” platform for the open data service.
And in case there is any concern that public fears about privacy are not being managed, the Prime Minister’s department assures us the federal government’s Open Government Partnership pledge to “build and maintain public trust to address concerns about data sharing and release” is officially on track.
A framework is being developed, based on “research involving public focus groups, and expertise and existing work programs within government” and this will “ensure alignment across government data and digital initiatives” while public engagement “on a broader level” is reportedly on schedule to kick off in the second half of this year, even though Christmas is fast approaching.
Public servants have also been preparing to establish an expert panel that would include “non-government representation from data groups, privacy groups, digital rights organisations, consumer rights groups, industry associations and civil society” in relation to the OGP pledge.
It seems these processes are mostly waiting on the Turnbull government’s looming response to the Productivity Commission inquiry into data availability and use, which is also expected sometime before the end of 2017.