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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 two: Understanding and mapping health data ecosystems

Data ecosystems in healthcare

PreviousPlay two: Understanding and mapping health data ecosystemsNextData governance and trustworthy data ecosystems

Last updated 3 years ago

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Healthcare spans a complex ecosystem consisting of private and public organisations, governmental bodies, communities, and people. Data about people’s health is no longer confined to medical records and clinical trials. For instance, some personal health data is inferred from lifestyle habits and online behaviour tracked by wearable technologies and smartphone apps. And, on an environmental level, health data is inferred from other sectors such as housing, transport, agriculture and food. Therefore, projects that seek to create value from the use of health data need to consider the wider ecosystem and understand the dependencies and interactions between stakeholders and the delivery of healthcare, commercial activities and research across sectors and jurisdictions.

Mapping out the ecosystem in which data is accessed, used and shared can be a useful way to visualise and understand this value exchange. It can help health data leaders create strategies for building a healthy data sharing ecosystem and secure investment to improve research, healthcare systems and treatment outcomes.

Figure 1, which was developed for the , shows a typical health data ecosystem and illustrates the complexity of relationships and value flows.

As Figure 1 shows, there are multiple stakeholders that collect, access, share and use data within the health sector. These include:

  • Stakeholders, who both create and use data, such as the healthcare industry and governments.

  • Data stewards, who are responsible for collecting, managing and sharing health data, such as private or public organisations with a mandate to steward data.

  • Data processors, who create solutions for other stakeholders, such as digital applications, products and services.

  • Data users, who use data to create new insights and products, such as researchers, analysts and organisational decision makers.

WHO Health Data Governance Summit
Figure 1:
A typical health data ecosystem