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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
  2. Mapping the data ecosystem

Use case 2: Identifying current stakeholders to reduce snakebite mortality and morbidity in India

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Last updated 3 years ago

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Creating a data ecosystem map can be used to identify potential users and communities who might benefit from the creation of new partnerships and data provision. This use case illustrates how data ecosystem mapping was used to map snakebite management in the state of Tamil Nadu, India. The end goal was to inform healthcare planning and to optimise distribution of resources for prevention and treatment.

The researchers started with the premise that addressing a snakebite health problem requires an interdisciplinary approach. They captured the following elements in the map below (Figure 4):

  • existing flows of healthcare data

  • data about the climate, ecology and urbanisation

  • use of predictive data tools

  • potential data flows to address snakebite mortality and morbidity

  • potential value flows to the healthcare and research communities

  • the data and value flows underpinning antivenom distribution.

By drawing the map, they were able to understand the complexity of the snakebite process and the human, snake and environmental interactions.

They then focused on introducing preventive interventions and understanding what support and services would be needed, including:

  • community outreach programmes to educate people

  • more accurate local estimates of the risk of snakebite using data being collected

  • public health officials who are in charge of preparing an annual request for antivenom in a healthcare facility being able to order the right quantity of antivenom

  • non-governmental organisation leaders who are focused on prevention activities, eg community outreach programmes to educate the population, being able to prioritise the villages most at risk for public awareness campaigns in their organisation’s yearly operational plan

  • health policymakers being able to incorporate into their multi-year strategic planning insights around how climate change, urbanisation and migration are predicted to affect the risk of snakebite envenoming and corresponding resource requirements in the region.

The insights drawn from the snakebite map and the visualisation of the unmet need of antivenom treatment is an example of how ecosystem mapping can inform the planning of healthcare service allocation or prevention efforts.

Figure 4: for preventing snakebite mortality and morbidity in Tamil Nadu, India
Ecosystem map