committee recommends that Australia forms partnerships with other countries
engaged in data linking to ensure that Australian data access and linkage
policies and regulations are developed to world's best practice.
committee recommends that the Department of Health, as a high priority,
actively explore and then implement measures to advance cost‑effective,
evidence‑based policy development through the use of data linkage.
committee recommends that relevant government departments should include
information in their annual reports which describes the processes and projects
being undertaken to establish evidence‑based policy based on data linkage
as well as strategies they have adopted to contribute to the government's pubic
committee recommends that given the changes in technology, and mindful of the
capacity and moral obligation for governments to hold and strongly secure
personal data and privacy, the government review the operation of section 135AA
of the National Health Act 1953, with the aim of improving access to de‑identified
MBS and PBS data for the purpose of health policy evaluation and development as
well as research undertaken in the public interest.
committee recommends that the Australian Information Commissioner, in
consultation with privacy advocates, data custodians, academics and healthcare
consumers, review the Privacy Guidelines for the Medicare Benefits and
Pharmaceutical Benefits Programs in order to ensure that the government:
- retains ownership
and management of Australian MBS and PBS data and improves technological capacity
to ensure the privacy of all Australians health data; and
- develops a strategy
to improve access to de-identified MBS and PBS data for the purpose of health
policy evaluation and development as well as research undertaken in the public
interest, in ways that don't decrease privacy.
committee recommends that each Australian Government agency develop and
maintain on its website a list of datasets held by the agency along with the
contact details of the data custodian. This list should be updated at least
committee recommends that all datasets held by the Commonwealth be listed on www.data.gov.au, identifying which agency is the
committee recommends that each Australian Government agency that is a data
custodian develop and publish on its website guidance for researchers detailing
its process for data requests and approvals.
committee recommends that the government take a whole-of-government approach to
streamlining the ethics approval process and the authorising environment in
consultation with the Privacy Commissioner, privacy advocates, the NHMRC, data
custodians, academics, consumers and the States and Territories. The government
should also work with the States and Territories to establish a national
accreditation system so that ethics approvals from accredited jurisdictions are
recognised by the Commonwealth.
committee recommends that relevant government agencies give greater priority
to, and adequately resource, their data custodians.
committee recommends that relevant government agencies provide guidance to data
custodians to assist them in their decision-making, with a view to making more
de-identified data available on an enduring basis.
committee recommends that the government adopt the Productivity Commission's
proposed principle that open access to de-identified datasets should be the
committee recommends that the government should direct relevant agencies to
release de-identified datasets on an enduring basis as the default position.
committee recommends that departments that have data custodianship
responsibilities must establish and publish realistic Key Performance
Indicators for the timely consideration and approval of datasets requests.
These departments must publicly report on their KPIs in their annual reports.
If after 5 years departments continue to delay the release of
datasets, then the committee recommends that the government establish binding
timeframes for processing applications for data. Failure to comply with the
timeframe should trigger appeal rights similar to those found in other
information access regimes.
committee recommends that Government encourage collaboration on data linkage
projects between government agencies, as well as academia and industry to
provide for evidence-based policy development and facilitate research that is
undertaken in the public interest.
committee recommends that government consider accrediting State data linkage
units to link Commonwealth data with State data collections, subject to
comprehensive privacy and security protocols.
committee recommends that the Government review the cost of data access and
linkage work undertaken by Commonwealth entities with a view to facilitating
research and innovation in the national interest.
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