My Data Our Health
Your health data. Your voice. Your power.
Zahara, in Uganda, tried to get a copy of her own health records. She was refused. Grace, in Kenya, was told her records don't exist in one place. Lab results? Go to the lab. Consultation notes? Go back to the consultation room. Her own data, inaccessible to her.
Ibrahim found out his record had been erased due to a technical error. Just gone, no trace. Nathan, also in Kenya, got his records without any trouble.
Four people. Four completely different experiences.
Every time you see a doctor, visit a hospital, or use a health app, your health data is being collected. In many places, there are no clear rules about who can access it, share it, or profit from it. You may never know.
Most of us treat this as an afterthought. But your health data isn't just about you. It shapes what treatments get researched, which communities get resources, and how AI makes decisions about people like you. It can also determine how health systems, insurers, and employers treat you personally. This isn't just a healthcare issue. It's a human rights issue, and most of us are sleepwalking through it.
Together we can change this!
This Is Just the Beginning
200 civil society organisations mobilised across six countries in East and West Africa. 97 Members of Parliament engaged, and committed to take the issue forward in their national legislatures. 6.7 million people reached East Africa alone. Learn more.
Partners across Kenya, Senegal, India, Indonesia are driving public campaigns to raise awareness about data rights, ownership and consent, finding out about their own health data, and engaging the media and politicians. This issue needs your urgent attention – Join us!
People are already taking action!
For the #MyDataOurHealth campaign, we asked people to go to their health centres and request access to their digital health information. Here's a selection of the responses we received.
The #MyDataOurHealth is a global campaign that raises awareness of the importance of health data, and calls on politicians to ensure clear laws and regulations are in place to protect it, while also enabling others to use it for collective good.
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.
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.
What happens when people act
The dashboard below captures and visualises the lived experiences collected through public responses on the 'Where'sMyData?' campaign action. 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.
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