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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 four: Making data interoperable

Existing standards for data

PreviousStandards for data and interoperabilityNextData adaptors

Last updated 3 years ago

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Consider using an existing open standard where possible, either in its current form, or adapting or extending it to meet your needs.

Using an existing open standard will help to:

  • enable aggregation and linking of data from multiple sources

  • collaborate with other stakeholders around data infrastructure

  • make reusable and repeatable processes or data.

You can find existing open standards through:

  • formal standards bodies

  • conferences

  • standards teams or working groups

  • websites, blogs or social media

  • open source projects or repositories like GitHub

  • public procurement policies.

The includes some useful pointers on how to find and adopt existing standards.

You can influence the development of existing standards through participation in standards working groups or by working with formal standards bodies.

When you adopt a standard, you may want to engage in the community that maintains the standard to:

  • ensure your needs are considered and reflected in future development of the standard

  • help with developing documentation or training to increase adoption

  • advocate for wider adoption of the standard, to reduce the likelihood of the market switching to a different standard, which would entail costs.

  • how the standard is licensed

  • which standard best meets your needs

  • whether it is actively maintained

  • the level of guidance available to help you use the standard.

When no existing standard is available

Where there are no available standards, it may be useful to engage partners who are working in a similar area to understand how they approach the situation.

There is always the option to lead the way and develop a new standard, however this needs careful consideration as it can be resource intensive and costly. Before you create a new open standard, you must understand the problem the standard will solve or need it fulfils.

There is a range of that are used globally. Stakeholders need to decide which standard or standards to adopt. There are a number of factors to consider, including:

There is a available which will help you to decide which standard to adopt.

There is more guidance on development in the standards for data guidebook.

open standards for data guidebook
health data standards options
checklist
getting started with standards
Stages in standards development