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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 nine: How to set up successful data sharing partnerships
  2. A step-by-step guide to setting up successful data sharing partnerships

Step 3. Build and maintain relationships with your data sharing partners

PreviousStep 2. Define the principles that will guide how data is sharedNextAppendix: International frameworks for data sharing principles

Last updated 3 years ago

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Trust is a fundamental, core requirement of health data ecosystems. The health data ecosystem is complex, and for many actors to achieve their goals, they need support from and alignment with others (see play). When sharing or accessing data, organisations need to be able to trust those they are interacting with and feel comfortable doing so.

We know that : organisations need to to specific audiences rather than to the world in general. Building relationships with partners, based on shared principles and values, can help to build trust and assess trustworthiness.

It can help to create a shared document that:

  • describes the need for data sharing to achieve the defined purpose/goal

  • speaks directly to each stakeholder/audience

  • draws on evidence of proven successes

  • describes broadly how data sharing contributes to societal benefits and improved health outcomes for all.

Key actions to take:

  • Describe the overall purpose/benefit you are seeking to generate from the data sharing activity ( in this play). This can be used as your broad statement to describe the benefits of data sharing.

  • Review the purposes and audiences you identified for data sharing ( in this play). For each audience, list what benefits you think they would like to see from greater sharing of health data. Can you describe the purpose of your data sharing objectives in terms of how it will help create these specific benefits that each audience is seeking?

  • List the core principles that will guide your data sharing partnerships and data sharing project goals ( in this play).

  • Create a communication asset that pulls together these messages in a few slides or a short briefing. This could include: the overall purpose/benefit of the data sharing project; a page for each audience that specifically describes the benefits they are expected to receive, and how risks will be managed; a summary page that describes the benefits overall and for society from data sharing.

  • Continue with the other chapters in the Data Sharing section of this playbook, including identifying and managing risks, and considering the type of agreement that is most suitable to the data sharing partnership.

roles and responsibilities
trust is relational
demonstrate their trustworthiness
Step 1
Step 1
Step 2