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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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  • Licences
  • Data sharing agreements
  • Terms and conditions
  • Codes of conduct

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

Common types of data sharing agreements

PreviousPlay ten: Sharing health data: data agreements and technologiesNextHow to choose the best method of sharing data

Last updated 3 years ago

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When setting up an agreement for sharing data, it is important to ensure that rights to access, use and share data are clear. This clarity comes from having explicit licences and agreements for the use of third-party content, and understanding relevant legal restrictions or permissions. There are four common ways to provide this clarity: licences, data sharing agreements, terms and conditions, and codes of conduct, as described below. This play focuses on licences and data sharing agreements.

Licences

  • republish the content or data on your own website

  • derive new content or data from it

  • make money by selling products that use it

  • republish it while charging a fee for access.

Data sharing agreements

Terms and conditions

Terms and conditions, or ‘terms of use’, are a set of rules that describe how a user can use a service. A good set of terms and conditions will clearly and separately identify those rules that relate to a user's use of the service (for example how often the user can use it) from those rules that relate to the data that may be provided or made accessible to a user in connection with the service.

Codes of conduct

Codes of conduct have emerged as an agreement to set common standards for data sharing contracts and to demonstrate compliance with applicable legal standards. Codes of conduct may provide principles that the signatories/subscribers/members agree to apply in their contracts.

A describes the ways that data can be used without any of the organisations involved having to enter into a formal agreement. Licences are best used for open and public data. A licence will tell you whether you can:

Unless you have a licence, data may be ‘publicly available’, but users will not have permission to access, use or share it under .

are signed by the organisations sharing and receiving data. They describe the data to be shared, the purpose(s) of the data sharing and how the data can be used, how, when, where and for how long the data will be shared, and the roles and responsibilities of the parties. Data sharing agreements are most useful when organisations, of any kind, are sharing sensitive data. A contract with detailed, binding requirements helps make sure everyone is clear on their obligations.

licence
copyright or database laws
Data sharing agreements