Health Data
Governance Summit

GOVERNING DATA FOR BETTER HEALTH

30 June 2021, 14:00 — 17:00 CET and 30 September  2021,14.00-17.00 CET

Over 2 half days in June and September 2021, the summit identified potential solutions to the challenges of implementing standards, solutions and infrastructure to increase the value of health data as a strategic asset. Best practices and challenges included data from public health, routine health structures, research, trials and GIS, with specific focus on data storage, sharing, legal and ethical aspects.

Summit presenters

Introduction

The COVID-19 pandemic has produced large amounts of data and accelerated the trend towards digitalization in health. But to harness the full potential of data for better health outcomes data needs to be collected, shared and used effectively. A new global consensus on health data governance is needed to make health data a global good.

Improving evidence-based health outcomes depends on data that is available, timely, actionable and reliable. Health data needs to be collected, stored, shared transparently and analyzed, based on the foundations of strong data governance. This includes technical, regulatory and policy frameworks.

The COVID–19 pandemic has exposed long-standing data governance issues, such as intellectual property rights, data sharing, reuse and storage. Globally, persistent data gaps and fragmented approaches to governing health data in different contexts are a major roadblock to using data as a Global Public Good. Health data is a strategic asset that needs global cooperation with clear direction in an evolving fragmented global landscape.

This is highlighted in the UN Secretary General’s Data Strategy, World Bank’s 2021 Development Report, 52nd UN Economic and Social Council Statistical Commission and OECD’s Partnership in Statistics (PARIS21).

The momentum for health data being a Global Public Good requires: i) consensus building, ii) investment (technical, regulatory and policy), iii) implementation (training and capacity building), and iv) multi-sectoral partnerships, that includes citizen science.

Institutional work on data governance

Summit statement

The June Summit first half day identified key themes, which were incorporated into a Summit Statement, which was made available for public comment.

Comments and feedback were incorporated. The final draft statement was presented on 30 September and is available here.

WHO hosted Data Governance Summit 30th September 2021

Video of entire data governance summit meeting 30th September, including opening remarks, keynote speech, 3 break out sessions on research, surveillance and data sharing, and a multi stakeholder panel on institutionalizing good data practices, closing remarks and conclusions.

WHO hosted Data Governance Summit 30th June 2021

Video of entire summit meeting 30th June, including opening remarks, keynote speech, 3 panels, 3 videos and closing remarks and conclusions.

Using data to improve health for everyone, everywhere: WHO’s World Health Data Hub

The WHO World Health Data Hub (WHDH) is an end-to-end digital solution to streamline data processes and improve access to global health data as a public good. Dr Samira Asma, Justin Spelhaug, Innes Grant and Dr Soumya Swaminathan share their insights on why health data is important for a robust health care system and why data governance is important to ensure that data is usable, accessible and protected.

Challenges in Governing Health Data: Stakeholder Perspective

What are some of the main challenges of health data governance? We hear about some of the most common challenges and oversights for data governance and what organizations can do to overcome them. These include data equity, building infrastructure, cybersecurity, improved analytics, AI, IT platforms, data sharing toolkits, data flexibility, and many more.

 

Unified Data Governance and Better Data Sharing

With unified data governance and better data sharing, the burden on frontline healthcare workers can be reduced. Resource allocation and responses to disease outbreaks can be enhanced. Thereby improving the lives of healthcare workers, patients, and communities across the globe.

Objectives

WHO and partners will build on this momentum for greater international collaboration on data governance by hosting a Health Data Governance summit, which aims to:


1

Review the current landscape of global health data.
2

Identify and share good practices in governing health data.
3

Encourage consensus for health data being a Global Public Good and good practices for health data governance.