A global health data governance framework: Maximising public value of health data whilst protecting individual rights

Kirsten Mathieson, Policy and Advocacy Lead, Transform Health

The 2023 UN World Data Forum truly highlighted the power of data in advancing the sustainable development goals. However, a recurring theme across many of the Forum’s plenary discussions and sessions was the need for stronger governance of that data. The session on ‘Maximising the public value of health data whilst protecting individual rights’, brought together a panel of experts - including the Minister of Health Zanzibar, WHO, the SDG monitoring section at UNDESA and JSI - to explore some of the challenges and issues around the governance of health data and opportunities to strengthen this, including through a global health data governance framework.

Health data: A vital asset for both personal and population well-being

Our health data is an extremely valuable asset - both a personal asset and an important asset for the wider population. Not only is it important for maintaining our individual health and well-being, but it is also vitally important for the public good. At the same time, our health data contains personal and sensitive information, thus requiring special protections and safeguards to ensure it is not misused.

Access to timely, accurate and inclusive health (and health-related) data can improve programmes, policies and decision making, and advance innovation and research, leading to better health outcomes, reduced inequalities and progress towards Universal Health Coverage and wider sustainable development goals.

The digital transformation of health systems has led to an exponential increase in the generation of such data. While this offers even more opportunities to drive impact, it also reveals weaknesses and cracks in the governance of that data. A lack of robust and inclusive regulation means that we are not fully harnessing the potential of digital technologies and data. And it also exposes that data to serious risks, which could allow individuals’ personal and sensitive health data to be misused in ways that increases inequities, violates human rights and undermines public trust.

Stronger regulation to govern health data

This is why Transform Health and others are calling for the development of a global health data governance framework - to facilitate the improved and equitable use of data for public good, while ensuring adequate safeguards to protect individuals’ rights.

A global framework would establish an agreement around a set of common regulatory standards to govern the collection, storage, use and disposal of health data, for endorsement by governments through a World Health Assembly resolution. This would strengthen national legislation and regulation, while also governing data sharing across countries. A strong regulatory environment would ensure the accountability of all actors in the country, provide citizens with avenues for redress, and improve public trust in health data systems, which is critical to foster data use for public good.

Such a framework should be based on equity and rights-based principles. In 2022, Transform Health launched a set of eight health data governance principles - a product of a year of consultations and inputs from more than 200 stakeholders - which have already been endorsed by 140 organisations and governments.

It is important that a global framework is developed through a transparent and inclusive, multistakeholder process. Led by WHO, on behalf of and together with its Member States, this process must include the meaningful engagement of civil society and communities. The voices of those whose data we are talking about must be part of the conversation to have a say in the way their data is collected and used. This would also further strengthen trust in data systems and between citizens and decision-makers.

A Call for Action

The need for stronger health data governance regulation is more urgent than ever. This year offers a number of opportunities to ensure this happens, including the upcoming World Health Assembly in May, the UHC High-level meeting in September, and the G20 (see Transform Health’s Key Asks for this critical year of action). We must seize these opportunities to kick start the development of a global framework, for endorsement by governments at the 2024 World Health Assembly.

There is growing support for action - both from governments and the wider community. More than 150 organisations have signed a global letter calling for the development of a global framework. Transform Health, together with Ministries of Health, are organising a side event on this pressing issue during this year’s World Health Assembly (on the 24th of May).

We encourage all governments, and stakeholders, to champion this agenda to ensure better governance of health data that delivers health for all.