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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 1. Understand the purpose of sharing data, and with whom

PreviousA step-by-step guide to setting up successful data sharing partnershipsNextStep 2. Define the principles that will guide how data is shared

Last updated 3 years ago

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There are multiple purposes for which data could be accessed, used and shared. Data sharing often helps to generate new benefits or insights that can't be achieved without combining or making use of multiple datasets.

Understanding the purpose for accessing, using and sharing data is a fundamental first step. Being clear about the purpose can inform the method by which data is acquired or shared.

In a healthcare project, the purpose could be, for example, to:

  • improve individual health outcomes by enabling personalised decision making

  • optimise health systems by identifying opportunities to allocate resources more efficiently

  • reduce unequal health burden by using data to inform resource allocation to those most in need or to tackle rare diseases

  • ensure equity in participation in health research

  • expand innovation, for example through use of machine learning.

Identifying the purpose of data sharing, and therefore the intended use, can help to identify key stakeholders that will use the data. Understanding who the potential audience is, and what value you want them to gain from using the data will help you decide what method you use to acquire or share data, and how restricted or unrestricted use of the data needs to be (the ).

Table 1 below describes some of the actors you might want or need to share data with, and describes some of the typical benefits each type of stakeholder would expect to generate from data sharing. The types of data that are shared will influence decisions on how to manage risks, and what sort of licensing agreement is most suitable to the data sharing partnership.

Table 1 - Actors and benefits of data sharing

Actors
The value they expect from accessing shared data

Senior data leaders

Ability to view large, integrated datasets as essential tools for health research and for decision making.

Health system leader

Ability to ensure health data interoperability so it can be used in clinical decision making to deliver personalised healthcare.

Policy leaders

That the health sector will be transformed by the collection, integration and sharing of personal health data as some individuals have demonstrated an increasing interest in sharing and accessing their health data.

Health project partners

Recognise the importance of health data in accelerating the development of innovative medicines and technologies.

Government health bodies

View health data as a driver of improved healthcare delivery, reduced healthcare costs and innovation in the healthcare space.

Key actions to take:

  • Identify and record which data assets you want to share.

  • Define what you want to achieve by sharing the data: what is the purpose and intended use? What value/benefit do you hope to generate from sharing this data?

  • Describe who you think you will be sharing the data with or who you need data from, and how these actors will help you achieve your intended purpose (as outlined in the play).

Data Spectrum
health data ecosystems