My Data Our Health
Your health data. Your voice. Your power.
Every time you visit a clinic, go to the hospital, or use a health app, data about your health is collected and stored. But do you know where that data goes? Who can access it? What they know about you, without you ever being told? Or how it might be used, now or in the future?
In many places, there are no clear rules about what happens to your health data once it’s collected. That means your information could be shared, reused, or accessed in ways you never agreed to, and may never even know about. And that's not good.
Your data can shape decisions about your care. It can affect how you’re treated. And in some cases, it can follow you beyond the health system — into other areas of your life like job opportunities or insurance. And you may have no way to see it, correct it, or stop it.
This isn’t just about healthcare. It’s about your privacy. Your rights. Your future.
Watch the videos to understand what’s happening to your data — and why it matters to you.
Do you know where your data is?
Every time you visit a clinic, hospital, or health app, your personal health data is collected. But do you know who controls it? How is it used? Or if it is protected?
Most people don’t. And that needs to change.
Health data can be a powerful tool to improve lives, but it must be governed by rules that are fair, transparent, and respect individuals’ rights. Currently, many countries lack these safeguards.
We’re saying: enough. We believe it’s time to create health data systems that prioritise people over institutions, corporations, and governments. For more context, watch the video.
Learn more about our work towards strengthening health data governance
We’re challenging the status quo by asking the big questions:
Who decides how our health data is collected, used, shared or deleted?
What protections are in place and who’s enforcing them?
Can individuals actually access or control their own records?
How is this data used to advance equity and public good?
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Take Action
STEP 1: Ask “Where’s My Data?”
- Ask your clinic, hospital, or health provider for a copy of your personal health records and find out whether you can actually access your data.
STEP 2: Share your story
- Share your experience – good or bad – to help expose how health data systems are working (or failing) for people around the world.
STEP 3: Push your leaders to act
- Call on your elected representatives to support laws and standards that protect people’s health data and rights.
This Is Just the Beginning
Hundreds have already taken action asking “Where’s My Data?”, sharing their stories, and putting pressure on governments.
Coalitions in countries across Africa, Latin America, and Asia are mobilising communities, running public actions, engaging national media, and calling on leaders to act.
Together, we’re laying the groundwork for change and we need you with us.
What happens when people act
You can scroll horizontally and vertically to see the complete dashboard. You can access this page and the dashboard in French, Spanish, or Indonesian by using the translation plugin at the bottom right of the screen.
Ready to join the movement?
Demand health data systems that work for ALL people.
Request your records. Share your story. Push your leaders to act.
