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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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  1. Play ten: Sharing health data: data agreements and technologies
  2. How to choose the best method of sharing data

Step 1: Decide how widely you need or want to share data

PreviousHow to choose the best method of sharing dataNextStep 2: Decide on the type of agreement required for sharing data

Last updated 3 years ago

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Data exists on a spectrum, from closed to shared to open. This spectrum (Figure 1 and the box below) can help when considering how widely data needs to be shared, which can inform the type of agreement for sharing data required, and if or where technology can support the sharing of data.

By making data as open as possible – while protecting people from harmful impacts – we can unlock more value from it. Data that is as open as possible is available to more people, with fewer restrictions on how it can be used. This creates opportunities for that data to be used in innovative ways.

By its nature, health data often contains personal or sensitive information and therefore will often sit in the ‘shared’ part of the Data Spectrum. The playbook section on managing risk when using personal data will help you consider how widely the data is suitable for sharing.

When you have decided where the dataset you need to share sits on the Data Spectrum, you then need choose which type of agreement is best suited to support the data sharing activity.

Closed data is data that is held privately within an organisation, such as employment contracts and policies, or asset registers of healthcare equipment. This data is not usually shared externally.

Shared data is data that is only available to certain people or groups, such as researchers, alliances and networks. Data that is shared will typically be made available for specific purposes that are defined by a data sharing agreement.

Public data is data that is visible to everyone, but with limited or unclear rights. Just because something is visible online, it doesn't mean you can freely make use of it. To reuse public data, it is necessary to approach the rights holder to establish if it can be reused freely or if there are restrictions.

Open data is data that is available for anyone to access, use and share. It is usually published under an open licence that allows it to be used for any purpose.

Figure 1: The health Data Spectrum