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Health Data Governance: Understanding the ecosystem and current maturity

Written by Mark Boyd
Updated at Sun Nov 07 2021
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Who should read this:

Anyone working with health data

What it’s about:

WHO are hosting a Data Governance Summit that is open to everyone

Why it’s important:

Understanding the current level of progress around how health data is governed and stewarded by industry, governments, NGOs and with the participation of patients and civil society advocates is essential to ensure that health data is used with respect to privacy and for social good.

(Source image above: World Health Organization)

Mark Boyd, working as Senior Policy Associate with the Open Data Institute, contributed to the development of 3 new resources to be used as background materials (pre-reads) for the World Health Organzation's Data Governance Summit. The Summit is open to anyone with an interest in health data governance.


Download the ODI's pre-reads on data governance best practices, created for the World Health Organization


The pre-reads provide a summary of where the sector is at in regards to three key areas for health data:

  • An overview of the landscape and how all of the stakeholders fit together: our health data landscape summary
  • A discussion of how health data is a global public good and some of the current conversations that need to be resolved to achieve global consensus and action
  • A summary of how data governance processes can build trust amongst all stakeholders including key components and examples of best practices.

The health data landscape

For this work, Mark Boyd, working for the ODI, helped design an overview of the health data ecosystem, or landscape. 

Diagram of the health data ecosystem showing datasets, stakeholders, data governance processes, and value generated
Platformable's interpretation of the WHO pre-reads describing the complete health data ecosystem

A. Datasets

Health data is about people, organisations, society and the environment. Data is stored/collected both within and outside the health sector.

B. Stakeholders

Health data is used to generate value by a range of stakeholders that draw on data collected and managed by data stewards. Data stewards work with data processors along the data journey (from collection, through validation, storage, and sharing, to use and analysis).

C. Data governance processes

Underpinning the way data stewards and data processors handle data are data governance principles and processes. Data governance helps ensure that the management and use of health data is handled responsibly and fosters trust.

D. Value generation

Health data, when used by stakeholders, generates a number of personal, commercial, societal and environmental benefits.

In the pre-read decks prepared by the ODI, this model was used to demonstrate how health data and value flow in specific case studies. These include: 

  • Tanzania's health information services
  • Brazil's burden of disease registries
  • GISAID's shared data for COVID-19 genome sequencing, and
  • WHO's Non-Communicable Diseases global data repository.

Other decks prepared by the ODI focused on health data as a global public good and the current global maturity and adoption of data governance processes.

You can download all three decks from the WHO Data Governance Summit registration page.

This research was led by the ODI and Vice President of Strategy, Dr Jeni Tennison.  Thanks to my colleague Shirley Torho for feedback on drafts and for participation in stakeholder interviews.

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Mark Boyd

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