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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. Data minimisation
  • 2. Validate data input wherever possible
  • 3. Anonymisation and suppression
  • 4. Use synthetic data
  • Specialist guidance

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  1. Play eight: Managing risks when handling personal data

Minimising risk - practical approaches

PreviousImpacts from use of healthcare dataNextAppendix: Risks from personal data exposure and how harms can be mitigated

Last updated 3 years ago

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There are several approaches that can be taken to maximise use of data about people, while protecting rights and individuals from harm:

1. Data minimisation

Do you really need to collect the data? If you don’t need personal details or commercial information, don’t collect them. This can help avoid the need to navigate data protection laws and make it more likely that you would be able to share the data with others. can also help overcome any ethical issues with collection, use or sharing of data.

2. Validate data input wherever possible

A key challenge with data collection is that sometimes each organisation inputs data using different approaches or formats, making it difficult to aggregate data in a way that it can be reused. This is especially the case when there are open or 'free text' fields, that is, input fields where those entering the data can make long notes. This can also open up the risk of exposing personal data when these fields are used in future data reuse or sharing. Some use of free text fields is inevitable, for example doctors need to be able to take notes on patient visits and add to the patient's electronic health record. However, wherever possible:

  • Replace free text fields with more validated data input fields, such as date fields or drop-down lists, to ensure input validation of fields. For example, data inputters can select a postcode or zipcode from a list, rather than inputting it manually. This helps ensure that only the necessary data is being collected and that it is immediately formatted in a standardised way.

  • Encourage data inputters to use a template approach when completing free text fields, so that there is some consistency. For example, a doctor completing a free text field could be encouraged to follow a specific format by describing the patient's current treatment regime, followed by any concerns/questions the patient raised, and finishing with a summary of the treatment provided and next steps.

3. Anonymisation and suppression

It is possible to process data into a modified form that can be shared or made open while significantly reducing the possibility of anyone recovering sensitive or personal information from it. For sensitive data in general, this process is called suppression; for personal data it is called anonymisation. The UK Information Commissioner's Office recognises the benefits of anonymisation in its , stating that: ‘The anonymisation of personal data is possible and can help service society’s information needs in a privacy-friendly way’.

  • More detail, including a worked example, is included in the ODI’s .

  • Also refer to the (ADF), which provides step-by-step guidance, , and a .

  • Finally, if you need expert input, there is a .

4. Use synthetic data

is created by an automated process and contains many of the statistical patterns of an original dataset. Synthetic data is sometimes used as a way to release data that has no personal information in it, even if it originally contained lots of information that could identify people. While there are , there is growing recognition of its potential.

  • This demonstrates how to create a synthetic dataset.

Specialist guidance

Assessing and mitigating risks when sharing personal data may require specialist input. You may need to consult colleagues, partners or legal specialists, including:

  • Scientific, policy specialists or ethicists, who can help you to consider how the data is to be collected, used or shared, as well as the validity of data exchanged.

  • Data and information specialists who understand: the technical aspects of the data to be shared; how the data may be integrated with other data sources that could raise other data protection or legal issues not inherent within the data alone.

  • Lawyers for legal support.

In all cases, this guidance is not legal advice and if you are uncertain, you should seek support from legal professionals.

Data minimisation
code of practice
An introduction to managing the risk of re-identification
UK Anonymisation Network’s Anonymisation decision making framework
a step-by-step interactive guide to the ADF
Risk, harms and benefits checklist tool
register of actors that can help with anonymisation
Synthetic data
some challenges in using synthetic data in healthcare settings
hands-on Python tutorial