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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

Standards for data and interoperability

PreviousWhat is interoperability and how is it relevant to healthcare?NextExisting standards for data

Last updated 3 years ago

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Standards are documented, reusable agreements that solve a specific set of problems or meet clearly defined needs. Standards detail the language, concepts, rules, guidance or results that have been agreed. are used when it is important to be consistent, be able to repeat processes, make comparisons, or reach a shared understanding.

Standards for data help with:

  • Increasing interoperability: data can be shared more successfully if tools and processes are used that are developed in line with a standard for data exchange and a standard for vocabulary and/or a way of working.

  • Improving comparability: using a standard to share vocabulary that makes language and concepts reusable and consistent can make it easier to compare data from different sources and draw conclusions.

  • Increasing discoverability: using open standards can make it easier to find data assets structured in a consistent way across different systems.

  • Enabling aggregation: open standards encourage the publication of new data and better quality data that is structured in a similar way, making it easier to combine datasets, and decreasing the cost and complexity of combining similar data from multiple sources. Open standards encourage the creation of new tools and services to take advantage of data that conforms to the standard.

  • Enabling linkability: a standard to share vocabulary featuring common codes and identifiers for people, places, events and things allows data from multiple sources to be linked, which increases the ease with which diverse datasets can be combined to increase usefulness and insight.

Examples of health data standards include:

Electronic healthcare records standards, like .

Models to ensure data exchange of electronic healthcare records, like the standards.

Standards and models in specific areas such as clinical research, like the .

International Classification of Diseases data models, like .

Standardisation of medical terminology models, like the .

Data models for managing healthcare data, like (OMOP).

Open-source solutions for sharing, integrating and standardising data from multiple sources, like for improving precision medicine.

OpenEHR
FHIR API
Clinical Data Interchange Standards Consortium
WHO ICD11
Snomed CT model
Observational Medical Outcomes Partnership
i2b2/transSMART
Standards
Types of agreements that fall under data standards