My Data Our Health
Your health data. Your voice. Your power.
TAKE ACTION.
Every time you visit a clinic, hospital, or health app, your personal health data is collected, but most people don’t know where that data goes, who controls it, or how it’s protected... if it’s protected at all.
When the rules around health data are weak or unclear, people lose access, privacy, and power, and health systems fail to serve those who need them most.
That’s why we’re building a global movement to demand health data governance that works for people, not just institutions.
Watch the video to learn more about why this matters and what needs to change.
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.
