In advocating for a health data governance framework, Transform Health aims to engage people and politicians in the discussion on how we can build trust in the collection, use, management, sharing and disposal of our personal health data.
My Data, Our Health is a global campaign by Transform Health that is being driven by community-based organisations who are engaging individuals on questions of access, control and rights over their health data. We are shifting health data from a technical issue to a personal one by putting individuals in the driving seat and amplifying their stories.
The My Data, Our Health campaign is starting a public and political conversation on the following questions:
- Who determines how our health data is collected, managed, stored and disposed of?
- What are the limits of this authority?
- How can we ensure this data is being used for public benefit purposes?
- How much access and control do and should individuals have over their health data?
- How can we ensure this ownership and control is respected and protected?
Find out how you can engage with the campaign in 4 ways.
1. Where’s My Data?
Take the Where’s My Data? campaign action action to contribute to the conversation on how much control we have over our health data and digital health information.
Go to your usual health centre and ask for your electronic health records or digital health information. Film a video sharing your experiences of what happens next.
Your experiences will be shared across the world to influence advocacy and public perception. Interested? Sign up!
SIGN UP FOR WHERE’S MY DATA? 
Tweet about Where’s My Data? and get your followers to sign up too!
2. Survey: How much do you know about your health data?
Take a 5 min anonymous survey on your health data. Anyone can take the survey, so share it around!
TAKE A 5 MIN SURVEY
3. Engage on social media
Download key posters and share them on social media using our communications toolkit, which includes blank templates for you to add your own messages about health data and its relevance to you.
Make a copy of the presentation to download posters, and edit and customise our key messages.
VIEW CAMPAIGN COMMUNICATIONS TOOLKIT
Use the #MyDataOurHealth AR Filter!
Use these filters on TikTok and Instagram to spread awareness about our control over our personal health data – in a fun way!
Use the guide below to use and share the filter with your followers.
VIEW GUIDE TO USING THE AR FILTERS
4. Influence governments with our Advocacy Resources
- Use the Health Data Governance Advocacy Toolkit that contains letters, talking points and other resources to support the call for a global health data governance framework among parliamentarians and governments.
HEALTH DATA GOVERNANCE ADVOCACY TOOLKIT
- Write to your governments to prioritise Health Data Governance at the World Health Assembly in May 2023.
LETTER TEMPLATE TO WRITE TO GOVERNMENTS
- View a 10-point action plan for parliamentarians on how they can engage their governments for action on this agenda.
FOR PARLIAMENTARIANS: 10 POINT ACTION PLAN
Resources
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