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Data Governance Playbook
  • Health data governance: a playbook for non-technical leaders
    • Why data governance is important in healthcare
    • Who is this playbook for?
    • How to use this playbook
    • Other related resources
  • Index
  • Play one: Implementing data governance in healthcare
    • The value of data governance for data-informed healthcare projects
    • How to implement a data governance framework for a healthcare organisation or project
      • 1. Data assets
      • 2. People
      • 3. Policies and processes
      • 4. Standards and technologies
    • Resources relating to this play
  • Play two: Understanding and mapping health data ecosystems
    • Data ecosystems in healthcare
    • Data governance and trustworthy data ecosystems
    • Mapping the data ecosystem
      • Use case 1: Mapping the ecosystem of a Covid-19 symptom tracker in the UK
      • Use case 2: Identifying current stakeholders to reduce snakebite mortality and morbidity in India
    • Resources related to this play
  • Play three: Roles and responsibilities in health data governance
    • Roles involved in health data governance
      • Senior data leader
      • Health system leader
      • Policy leader
      • Health project partner
      • Governmental body
      • Senior executive leader
    • How to enlist support from stakeholders
    • Resources relating to this play
  • Play four: Making data interoperable
    • What is interoperability and how is it relevant to healthcare?
    • Standards for data and interoperability
    • Existing standards for data
    • Data adaptors
    • When to use an adaptor
    • Resources relating to this play
  • Play five: Demonstrating the value of health data governance: case studies
    • Primary care data use: MedMij platform
    • Using research data: INSIGHT Health Data Research Hub
    • Using healthcare data for other purposes: Infectious Diseases Data Observatory
  • Play six: Emerging uses of data and technology in the health sector
    • Emerging uses of health data
    • Emerging technologies to support health data management
    • Resources relating to this play
  • Play seven: Assessing the legal, regulatory and policy context for sharing health data
    • Data protection laws and policies
    • Intellectual property
    • Other regulations and laws impacting use of health data
    • Socio-cultural norms
    • Resources relating to this play
  • Play eight: Managing risks when handling personal data
    • Managing personal data responsibly and ethically in healthcare projects
    • What is personal data?
    • Data protection regulations
    • Recognising personal data in healthcare projects
    • Impacts from use of healthcare data
    • Minimising risk - practical approaches
    • Appendix: Risks from personal data exposure and how harms can be mitigated
  • Play nine: How to set up successful data sharing partnerships
    • Understanding how data sharing occurs in the health sector
    • A step-by-step guide to setting up successful data sharing partnerships
      • Step 1. Understand the purpose of sharing data, and with whom
      • Step 2. Define the principles that will guide how data is shared
      • Step 3. Build and maintain relationships with your data sharing partners
    • Appendix: International frameworks for data sharing principles
    • Resources relating to this play
  • Play ten: Sharing health data: data agreements and technologies
    • Common types of data sharing agreements
    • How to choose the best method of sharing data
      • Step 1: Decide how widely you need or want to share data
      • Step 2: Decide on the type of agreement required for sharing data
      • Step 3. Consider how technology can facilitate data sharing and access
    • Appendix: Choosing technology to support data sharing and access
    • Resources relating to this play
  • Play eleven: Cross-border data sharing
    • What is cross-border data sharing?
    • Current trends and global discussions on cross-border data sharing
    • Overcoming challenges with cross-border data sharing
  • How to support trustworthy data sharing: Checklist
  • Slides to communicate the benefits of data governance to key health stakeholders
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  • Choosing a data repository
  • Choosing a data platform

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  1. Play ten: Sharing health data: data agreements and technologies

Appendix: Choosing technology to support data sharing and access

PreviousStep 3. Consider how technology can facilitate data sharing and accessNextResources relating to this play

Last updated 3 years ago

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Choosing a data repository

The catalogues a wide variety of data repositories for specific types of data, including clinical trials, social sciences data, observational studies and health economics. Each type of data lends itself to a specific type of data repository. In addition, data repositories may focus on specific disease groups or geographic regions.

Key actions:

  • Identify what features are required from a data repository, for example the ability to document a data dictionary, the ability to set licensing conditions, and so on.

  • Review available data repositories that match these criteria for the type of data and the features required.

  • When a shortlist of available data repositories has been determined, consider asking data partners and other stakeholders which data repositories they are most familiar with or would prefer to use.

Choosing a data platform

When more fully featured data sharing is required, and if resources are available, it may be necessary to build your own data platform. There are a range of options available. Commercial data governance providers such as data.world, Alation, Akvo and Atacama offer data platforms where data can be stored and made available under specific arrangements to external parties. These platforms often include a granular level of control where specific access permissions can be set for each external role, so that only specific elements of data are shared with agreed partners.

It may be necessary to build a solution from the ground up. Emerging solutions such as the , from Microsoft and technology partners, enables larger health providers to build a fully featured health data platform that may include components such as analysis and sandbox environments. Other technology providers offer similar tools.

Key actions:

  • Identify what features are required from a data platform, for example the ability to set granular permission controls, the ability to secure data within the platform for analysis within a sandbox environment, or analytics to log who makes use of data.

  • You will need to have a budget and IT involvement if you choose to host your own data platform. Work with your data manager, data systems lead and IT teams to prepare and fully document the business case and review available pre-built data platforms, or consider the implications of building a solution using components from existing technology providers.

Global Health Network's Data Repository Finder
Australian Lab3 infrastructure model