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Data Sharing and Release Legislation


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Presentation by Kelly Hart, ONDC in PM&C, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.

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Data Sharing and Release Legislation

  1. 1. DEPARTMENT OF THE PRIME MINISTER AND CABINET Data Sharing and Release Legislation Unlocking the value from publicly funded clinical research data Office of the National Data Commissioner
  2. 2. 2PRIME MINISTER & CABINET To unlock the potential of data, the Australian Government has agreed to a suite of reforms recommended by the Productivity Commission A new Commonwealth Data Sharing and Release Act will streamline access and use of data by overcoming barriers and providing a strong focus on identifying and managing risk. Under the proposed timelines, the Bill is expected to be introduced in the second half of 2019. The National Data Commissioner (NDC) will oversee new institutional and governance arrangements for data sharing and release to find a balance between using data for the benefit of society and ensuring community trust in the safe use of data. National Data Commissioner An Advisory Panel with cross-sectoral experts across data-driven industries will be established to advise the NDC on ethical data use, technical best practice, and industry and international developments. National Data Advisory Council Data Sharing and Release Act
  3. 3. 3PRIME MINISTER & CABINET • Establishing the National Data Commissioner and National Data Advisory Council • Ensuring transparency, accountability, and security of data sharing • Ensuring risk management applies and is appropriate in different settings • Appropriate monitoring, audit, and oversight by the National Data Commissioner Build trust in use of public data Safeguard data sharing and release in a consistent and appropriate way Enhancing the integrity of the data system Establishing institutional arrangements • Optimising use and re-use of data by streamlining sharing and release • Ensuring data is shared for the right purposes Promote better sharing of public sector data The legislation will be principles-based and focus on promoting better use of public sector data through safe sharing
  4. 4. 4PRIME MINISTER & CABINET Sharing should occur for the right reasons (Purpose Test)  Research and development  Informing government policy  Program design, implementation and evaluation  Improving Government service delivery
  5. 5. 5PRIME MINISTER & CABINET Public sector data is available to appropriate users Outputs are appropriate for sharing or release Data Sharing Principles Data Purpose Settings People Outputs The legislation will apply a risk-managed approach which requires consideration of Data Sharing Principles Data sharing or release is for an appropriate project or program of work The environment in which data is shared or released minimises the risk of unauthorised use Appropriate protections are applied to the data Based on the Five-Safes Framework, the Data Sharing Principles can be dialled up or down to effectively manage risk
  6. 6. 6PRIME MINISTER & CABINET The data sharing framework use existing process Data Custodian (or Accredited Data Authority if authorized by the Data Custodian) considers whether to share data No No Yes Yes Does the reason for using data meet the purpose test in the Data Sharing legislation Unable to share under this legislation No Yes Decision to share, conditions set in the Data Sharing Agreement Share Data Data is shared, having managed risks Data Sharing legislation may provide alternate authority to share data Can risks of sharing be reasonably and effectively managed using the Data Sharing Principles? Can data be shared easily under existing authority? Do not share data If risks cannot be treated sufficiently
  7. 7. 7PRIME MINISTER & CABINET The data sharing framework will establish different roles with key responsibilities Data Custodians • Government bodies that are the primary collectors or generators of data • Need to establish that Purpose Test is met and DS&R safeguards fulfilled Accredited Data Authorities • Accredited by NDC • Hubs of expertise in data curation, de- identification, and linkage • Not new bodies Accredited Users Data received subject to DS&R safeguards • Government and non-government bodies • Accredited Users • Strict limits on data on-sharing Data requests (NDC to monitor) Subject to any conditions in original Data Sharing Agreement Data Sharing Agreement outlines purpose of sharing and how safeguards are being met National Data Commissioner • Oversight • Regulation • Guidance • Accreditation Data Sharing Agreement
  8. 8. 8PRIME MINISTER & CABINET Since the ONDC was established in July 2018, we have consulted widely on the data reforms focusing on the development of new data sharing legislation We heard general support for: National Data Commissioner as champion and regulator Excluding data sharing for integrity purposes e.g. compliance National system Stakeholders wanted more details on: Interaction with other legislation and data schemes Distinguishing service delivery from compliance Resourcing and charging within the system Redress e.g. merits review and complaints Purpose test and excluded purposes for sharing Penalties that rebound to original legislation, if sharing is not authorised by the Data Sharing Act Interaction between new legislation and existing release mechanisms We have taken these on board through clarifying: An important step forward is for the ONDC to showcase how consultation has shaped legislation
  9. 9. 9PRIME MINISTER & CABINET In 2019, ongoing engagement and consultation will help us better understand concerns and inform the Australian people of our reforms to build trust and confidence Who? Why? How? External to government • The public • Special interest groups • Academic researchers • Private sector businesses • Media • Future Accredited Users • Understand public views and concerns • Design acceptable legislation • Communicate more effectively • Build trust and confidence • Position the ONDC as a trusted voice • Sentiment testing • Public lectures, conferences, roundtables in capital cities and in regional areas • Website and social media • Editorials and opinion pieces • Independent Privacy Impact Assessment States and Territories • Australian Digital Council • Senior Officials Group • Jurisdictional counterparts • Foster a national system • Promote the legislation • Collaborate for consistent approaches e.g. guidance • Increase understanding of what is mutually beneficial and needed • Seek advice and input at senior level meetings • Workshops • Working groups • Presenting at cross-jurisdictional forums Within the Commonwealth • Commonwealth agencies • Data Custodians • Accredited Integrating Authorities • Accredited Users • Finalise policy decisions which address barriers within the system • Ensure the practical aspects of the legislation serve their intended purpose • Roundtables • Interdepartmental Committees • Workshops • Accredited Data Authority working group Engaging with the public helps us communicate how we use data, understand their concerns and show we are serious about listening to their views.
  10. 10. 10PRIME MINISTER & CABINET We will continue to consult and seek feedback as we develop the legislation Key activities: • Public consultation on the exposure draft of the Bill, including a series of roundtables • Consultation within government Roundtables and developing the legislation: March Key activities: • Hosting roundtables with academics, privacy advocates and peak bodies • Bilateral meetings • Privacy Impact Assessment (Galexia) Draft Bill: Second half of 2019 Advice to Government and legislation development: June – August 2019 Throughout these processes, ongoing consultation will occur through bilateral meetings, blog posts, speaking and conference engagements, social media, the Open Government Forum, the National Data Advisory Council, and other forums as appropriate. Key activities: • Further roundtables in capital cities and regional areas • Blog posts • Bilateral meetings