Reflections from YET4H’s DHW Side event, #MyDataOurHealth Action for improved health data governance.
In a world where data is central to everything, not just innovation, health data – some of the most personal, intimate information – deserves the highest levels of protection and respect. Yet, too often, many people remain in the dark about how their health data is used, where it goes, and who ultimately has access to it. Transform Health’s #MyDataOurHealth campaign is trying to reframe the way we all think about our health data, and advocating for strong governance frameworks that empower individuals while ensuring health data is responsibly managed and used for public good.
In a recent side event during Digital Health Week, #MyDataOurHealth Action for Improved Health Data Governance, YET4H brought this critical conversation into focus. Young people explored the importance of building trust in health data systems that safeguard privacy and ensure responsible data use. While health data is collected and used daily, often without direct harm, there are scenarios where misuse could lead to significant consequences, such as discrimination based on health or genetic information, exclusion from services, or exploitation for commercial gain.
Why Health Data Governance Matters
Health data has transformative potential. When used responsibly, it can revolutionise healthcare, making it more efficient, effective, and personalised. Data-driven insights can lead to breakthroughs in health research, support policymakers in responding to public health challenges, and enhance overall healthcare delivery. However, this potential also brings risks, especially if health data is mishandled or accessed without consent. Imagine a scenario where sensitive health records are exploited, used commercially without permission, or even weaponized to discriminate against individuals or groups, or used to control people’ access to services such as sexual and reproductive services.
This is where health data governance becomes essential. Effective governance means implementing laws and standards that keep health data safe, private, and used only for purposes that genuinely serve the public good. It’s about creating a framework where data access is carefully controlled, regulated, and, above all, transparent. Governance is more than just policy—it is the foundation that builds trust between individuals and the institutions that collect, manage, and store their health data.
Key Takeaways from the MyDataOurHealth Session:
#MyDataOurHealth Action for Improved Health Data Governance, brought together passionate advocates, technologists, and health professionals who highlighted both the promise and pitfalls of digital health data. Here are some key takeaways:
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Transparency is Key: Transparency was identified as a core principle of health data governance. People need to know who has access to their data, how it’s being used, and for what purpose. Transparency builds the trust required for individuals to feel comfortable contributing their data to health systems.
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Empowering Individuals Through Understanding the collective experience: As individuals we may not feel we know about our own personal data, who holds it and how it is being used, but how widespread is this feeling. Is my experience shared by others? The #MyDataOurHealth dashboard serves as a tool, offering insights into people’s experiences of accessing their health data. By capturing these experiences, the campaign identifies patterns that decision makers can see and understand how they should respond to ensure people have more access and control over their health data. In doing this we will all be contributing the improving the quality and accuracy of health data while building trust and protecting people’s rights.
- Collaboration Between Sectors: Health data governance is a shared responsibility that extends to policymakers, tech companies, and civil society. The importance of collaboration, with each sector playing a part in crafting policies and systems that serve individuals and communities rather than exploiting them, was extensively discussed.
- The Role of Youth and the Public in Health Data Advocacy: This session highlighted the role that young people can play in advocating for responsible health data governance. With their digital fluency and deep understanding of digital systems, youth can effectively lead conversations and drive meaningful change. While individuals of all ages contribute to digital health advancements, youth are often particularly active in pushing for innovation and accountability in governance practices.
A Call to Action: How You Can Get Involved
Building a future where health data is respected and protected starts with each one of us. The #MyDataOurHealth campaign offers tangible ways for you to take action:
- Take part in the Where’sMyData? Action. Register HERE Find out how much control you have over your health data and share your experiences in the survey.
- Use Our Digital Tools: From Instagram and TikTok filters to campaign headers and posters, let’s use our digital spaces to raise awareness.
Building a Future of Trust and Transparency
At the core of #MyDataOurHealth is a commitment to transparency, accountability, and responsible health data practices. When individuals have confidence in how their data is managed, they are more open to sharing it, knowing it contributes to better healthcare outcomes for all. Robust governance not only protects individual rights but also enhances the integrity and effectiveness of health systems.
As we move forward, achieving responsible health data governance will be an ongoing, collaborative effort. By establishing clear standards and upholding privacy and respect, we can create a future where health data serves the public good, fostering a health system that truly benefits everyone.