We should all have a say in how our health data is collected, managed, used, stored and disposed of, as while exponential increases in the amount of data available present opportunities to improve health outcomes, they also risk data misuse and privacy infringements
Of all the data generated about us every day, our health data is among the most personal and sensitive. Our interactions online and offline leave a continuous trail that tells a story about our past, current and future health. Data can be used to predict, prevent and even influence our health outcomes. Our health data, when combined with that of others, is also a huge resource for public health. More and better health data can improve policymaking, programmes and resource allocation. However, we need to find ways to maximise the potential of health data to accelerate progress on universal health coverage and other health goals while also ensuring the right safeguards are in place to protect individuals’ privacy and rights.
The need for improved health data governance has become even more salient with the rapid transformation of our health systems due to the digital revolution. Exponential increases in the amount of data available presents a double-edged sword. On the one hand, there are huge opportunities to leverage data to improve health outcomes. On the other hand, in the absence of robust governance systems, there are also risks of missed use (as in missed opportunities to leverage data for public benefit) or, alarmingly, misuse of our data (such as misuse of patient data that leads to large-scale privacy infringements).
Despite the potential benefits and risks, health data remains poorly governed at the national, regional and global levels. Many countries have developed important regulations and policies for data protection and data security but pay insufficient attention to the specific governance considerations required for health data and how to strike the right balance between protecting individual rights and enabling positive use of health data for public benefit. Some governments are taking steps to address this, but the overall landscape is fragmented. There is no consensus among countries on what good (and equitable) health data governance regulation looks like and what the minimum standards should be across public health systems. Nor has there been sufficient discussion or action to learn from the good practices of countries, which could help strengthen approaches across borders.
Foundation for public trust
Stronger health data governance is needed to lay the foundation for improved public trust in health data systems and to provide the general public with avenues for redress in case they feel their rights are being violated or their data is being misused. This is why Transform Health is calling for a health data governance framework to build consensus and alignment across countries on minimum common regulatory standards for governing health data. Learning from existing good practices and approaches from countries and building on existing norms, standards and principles, a framework would forge agreement on the necessary and optimal regulation and legislation for the effective and equitable governance of health data. In turn, this would support countries in strengthening their national legislation and regulation and also harmonise and support cross-border data flows, with the needed protections in place.
A framework should be developed through an inclusive and consultative process to leverage and reflect the wide perspectives and expertise from across stakeholder groups and experts. Importantly, this process must include civil society so it has a say in how people’s data is being collected and used. A framework should also be informed by equity and rights-based principles and build on existing duty obligations and global standards, as well as learnings from countries. In April 2022, Transform Health published a set of Health Data Governance Principles based on the goals of protecting people, promoting health value and prioritising equity. The principles have now been endorsed by more than 150 organisations and governments and provide a strong foundation for the development of a framework.
There is growing political support for this agenda with several governments publicly expressing support for a common health data governance framework, including at this year’s 76th World Health Assembly. More than 150 organisations have also called on the World Health Organization to lead the development of a framework, for subsequent adoption by governments at the next World Health Assembly. This issue is also gaining traction at regional levels. In response to the African Union’s calls for sector-specific data governance, Transform Health is working with the Africa Centres for Disease Control to establish the new Flagship Initiative on Health Data Governance. The initiative will build consensus and legitimacy on an African Common Position on health data governance and provide tools and technical guidance to support national health data governance approaches on the continent.
An imminent start
Given the urgency of the need to strengthen health data governance regulation, it is important that the process to develop a framework starts imminently. Transform Health stands ready to support this process, in particular by facilitating, together with our partners, multi-stakeholder consultations to gather wide insights, expertise and best practices to help inform a framework. As well as pushing for political action to strengthen health data governance, Transform Health is working to raise awareness and mobilise public opinion about health data governance. As part of our MyDataOurHealth campaign, which is driven by community-based organisations, we are engaging individuals on questions of access, control and rights over their health data. We are shifting health data from a technical issue to a personal one by putting individuals in the driving seat and amplifying their stories.
Health data lies at the heart of who we are as individuals, as groups and communities, and as a species. This is even more so in a digital age where large parts of our identities are stored and reflected in disparate and composite data sets. How our health (and health-related) data is collected, managed, used, stored and disposed of is not just the business of governments and technology companies – we all should have a say. Through the inclusive co-creation of a global health data governance framework, combined with greater action at country level to give people more control over their health data, we can realise health for all in the digital age.