Hello! My name is Brittany, I am 19 years old and from Ecuador. Like many in my generation, I grew up immersed in the digital era, surrounded by social media, online platforms, and technological advances that are now a crucial part of our daily lives.

A couple of months ago, I had my first virtual medical appointment, and it was quite an experience. Artificial intelligence taking notes of my symptoms and diagnosis, virtual doctors, and digital assistants recommending treatments… it all felt extraordinary. I was impressed to see such progress in healthcare. Yet during that consultation, one question struck me: who decides what happens to the personal information I share during a medical appointment? Is it protected? Is someone monitoring it? That was the moment I began thinking about something rarely discussed among young people: health data governance.

Although it may sound like a “technical” term, it directly affects us. There is no doubt that, as Gen Z, we are digital natives. Global studies show that we do not only use technology but also influence its future development. Despite this, we often fail to question what lies behind digital systems, how our data is used—especially in sensitive areas such as health. We grant permissions without reading, download apps without knowing how they process our information, and trust digital systems that are not always designed to protect us.

In Latin America, and particularly in Ecuador, digital transformation is advancing, though regulations remain unclear and fragmented. In healthcare, this creates vulnerabilities. Lack of regulation, digital inequality, and limited digital literacy leave many young people exposed to risks—from loss of privacy to the misuse of medical data. According to the European Observatory on Health Systems and Policies, young people represent a crucial 16% of digital innovation adoption (Han Wong B, 2021). At the same time, however, we are among the most vulnerable on unregulated platforms.

Health data governance plays an essential role. It is about the systems, laws, and decisions that shape how our personal information is managed. At its core, it reflects broader social issues: who holds power over large systems, and how our medical records, diagnoses, or even mental health data are used. This raises important questions: Are our data truly protected? Are they used ethically? Do we have the right to decide? What happens afterwards with our information? Many governments in the region are still struggling to apply ethical and social principles to technological systems. And this is precisely where the voices of young people must come in.

Young people have the right to participate in decisions that affect our lives, as established by the UN Convention on the Rights of the Child and other international frameworks. Opportunities for youth consultations in the digital era are essential to ensure our voices are heard. If young people are not included, the issues we face will also remain invisible. After all, we are the next generation responsible for putting protection systems into action.

This is not only about shielding us from the misuse of our data but also about building a fairer system together. Including Generation Z in decision-making is key to creating processes that are both innovative and humane. We want our opinions to matter. We want to be heard not only as users but as citizens with digital rights. Because governing data is also about protecting our health, our dignity, and, ultimately, our future.

This is not only about shielding us from the misuse of our data but also about building a fairer system together. Including Generation Z in decision-making is key to creating processes that are both innovative and humane. We want our opinions to matter. We want to be heard not only as users but as citizens with digital rights.

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These concerns are why movements like Transform Health’s “My Data Our Health” Campaign are essential. This global campaign is built on the belief that health data governance must be centered on the rights, needs, and voices of individuals – especially young people who are pioneering the adoption of digital health technologies. Because governing data is also about protecting our health, our dignity, and, ultimately, our future.

Get involved in the campaign below:

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References

Han Wong, B. L. L., Holly, L., Gray, W., & Van Kessel, R. (2021). Youth digital adoption and health data governance. European Observatory on Health Systems and Policies. https://eurohealthobservatory.who.int/publications/i/youth-digital-adoption-and-health-data-governance

Engaging Gen Z in Politics: The New Wave of Political Participation – Participation People. https://participationpeople.com/political-participation/

From Local Voice to Global Digital Future: We Young People Must Go Through That Door (2025). Responsible Data for Children. https://rd4c.org/articles/data-governance-for-children-from-local-voice-to-global-digital-future-we-young-people-must-go-through-that-door/