ICTworks

 As technology is rapidly changing the world we live in, health systems around the world are increasingly using the power of digitisation. When utilised appropriately, this has the potential to improve the efficiency, quality and reach of health services, leading to more equitable health access and outcomes and presenting an opportunity to accelerate progress towards Universal Health Coverage.

With this has come a vast increase in the amount of health data that is collected and used. This has sparked the need for stronger and more equitable governance of that data. Last year’s Health Data Governance Summit, convened by WHO, highlighted the need for a new global consensus on health data governance to better harness the potential of data to improve health outcomes and make health data a global good. The recent Lancet and Financial Times Commission on governing health futures 2030 called for a new approach to managing health data that protects individual rights, promotes the public good potential of data, and builds a culture of data justice and equity.

Despite the development of health data governance policies and legislation in several countries, there is no global set of principles – nor a global framework – to inform the governance of health data and guide countries developing their own health data governance legislation and regulation.

Filling the health data governance gap

Transform Health and partners have worked to fill this gap by stewarding the development of a set of eight equity and human rights-based Health Data Governance Principles. The Principles seek to align policymakers and other stakeholders around a shared vision of equitable health data governance so that all people and communities can share, use and benefit from health data.

They recognise and build on other important initiatives, such as the WHO’s data principles (which provide a framework for data governance for WHO); the Principles for Digital Development stewarded by the Digital Impact Alliance; the OECD’s Recommendation on Health Data Governance and their Principles on Artificial Intelligence, among others. Moreover, they support the recommendations of the Lancet and Financial Times Commission. The Health Data Governance Principles complement and build on these efforts, while further strengthening the health data governance ecosystem.

Equity and human rights lens in health data governance

The Health Data Governance Principles bring an equity and human rights lens to the use of data within and across health systems – with the aim to maximising the public value of health data whilst protecting individual rights. And they are oriented towards supporting sustainable and resilient public health systems that can deliver Universal Health Coverage.

The eight Principles are clustered around three interconnected objectives:

1. Protect people – as individuals, as groups, and as communities;
2. Promote health value – through data sharing and innovative uses of data; and
3. Prioritise equity – by ensuring equitable distribution of  benefits that arise from the use of data in health systems.

Another key feature of the Principles is the inclusive, bottom up process through which they were developed. The process was designed to gather perspectives and expertise – and ensure meaningful engagement – of diverse stakeholders from across geographies and sectors. This included eight regional and global workshops, followed by a public consultation, bringing together inputs from over 200 stakeholders.

From Principles to Global Framework

There is a growing need for better global alignment and guidance on the governance of health data. The Health Data Governance Principles help respond to this need and are a critical step and contribution towards the development of a global framework – and must underpin its development.

We will work with the Data and Digital Governance Working Group of the Health Data Collaborative to support the development of such a framework, alongside efforts to build political will and support. It is vital for governments and other stakeholders to back the need for stronger health data governance by:

• Showing their support for and endorsing the equity and human rights-based Health Data Governance Principles, ensuring these underpin any global framework (endorsement form).
• Calling for and supporting the development of a global Health Data Governance Framework (grounded in equity and human rights principles), including sponsoring a resolution at the 76th World Health Assembly in May 2023.

These are vital steps for the participatory, equitable and efficient governance of health data so all people can benefit equally, in support of Universal Health Coverage.

Authors: Kirsten Mathieson, Policy Lead at Transform Health and Vikas Dwivedi (Senior Advisor, Palladium Group), Marie Donaldson (City University of New York School of Publc Health and Health Policy) and Vidya Mahadevan (Senior Data Governance Advisor, Social Solutions International/USAID) co-Chairs of the Digital and Data Governance Working group of the Health Data Collaborative.

Disclaimer: The views in this blog are those of the author(s) and do not necessarily represent the views of USAID or the United States Government.