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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 eleven: Cross-border data sharing

Current trends and global discussions on cross-border data sharing

PreviousWhat is cross-border data sharing?NextOvercoming challenges with cross-border data sharing

Last updated 3 years ago

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Legal enforcement of cross-border data sharing is often still unclear and can require specific legal expertise to navigate. Following the impact of the COVID-19 pandemic and growing recognition of the importance of cross-border data sharing for pandemic surveillance, countries are seeking to clarify and build new cross-border data flows trading agreements.

The in late 2021, for example, is expected to move towards creating a pandemic treaty to enable greater sharing of health data across borders, but this may only apply in emergency contexts, and the implications for data-sharing processes will be unclear for some time.

Within Europe, cross-border data sharing is governed by the General Data Protection Regulation (GDPR). The ‘Towards a European Health Data Space Initiative’ describes how health data can be utilised across borders more efficiently. Work to date includes mapping the potential data journey across . The next step is to identify best practice and process requirements for how data is collected, reviewed and shared for each of these seven stages of the data journey. This work is expected to be completed in early 2022. The group will then make recommendations on the required evolution of legal and policy contexts to facilitate greater cross-border data sharing. There is a proliferation of pilot projects to share data across borders. For example, a has begun between Finland and France to clarify how data can be shared across borders for improved population health outcomes, while still adhering to the relevant data protection regulations. Globally, bodies such as the are also researching obstacles to data sharing and mapping opportunities to resolve barriers to health data sharing between countries. These types of initiatives provide opportunities for more stakeholders to participate in the development of solutions. There are multiple bodies and consultation processes taking place that allow organisations to influence discussions and actively participate in shaping future global data policies.

World Health Assembly's meeting
seven touchpoints
pilot initiative
World Economic Forum