My Data Our Health: A week of celebration following a year of action on health data governance

The aim of this week of action was to highlight the importance of health data as a specific type of data that is in need of strong governance, to protect individual privacy and security while also allowing health researchers and planners to use it for the public good.

To date the campaign has mobilised thousands of people across different countries, online and in person around the importance of stronger legislation and regulation on health data. 

This year we will be holding the My Data Our Health week of celebration online from 22 to 26 January 2024, to  mark the progress to date of My Data Our Health and continue to highlight the need for common standards on health data governance as part of a wider global framework, in advance of Data Privacy Day on 28 January 2024.

This Week of Celebration will be taking place at the same time as the World Health Organisation Executive Board (EB) meeting that will determine the agenda of the World Health Assembly in May. While it will be too late to influence the outcomes of the EB meeting itself, it is important that governments and members of parliament are aware that this issue is a growing concern to both their citizens and to civil society.

My Data Our Health Week of Celebration

This year’s Week of celebration offers us the opportunity to advance this agenda and position the issue at the beginning of the year, particularly in countries where we have a higher level of engagement and at the regional level in East Africa, West Africa, Asia and South and Central America). To achieve this we need the following:

  1. More people actively engaged in the campaign, through the Where’sMyData? celebration  and on social media, talking about health data governance, using the MDOH filters, retweeting key messages.
  1. The mainstream media to cover this issue during the week. 
  1. Partners to feature the campaign on their website and to promote it through their social media. 
  1. More Members of Parliament publicly support this issue.  

Key Messages

  1. Data about our health is constantly being collected, yet we don’t know where it goes, who is using it or how it is being used, how securely it is stored and when it is disposed of. 
  2. Effectively used, our health data can save lives. It can advance health-related research and make our health systems and delivery more efficient, effective and affordable. However it can also be used to discriminate against us or deny us access to services. 
  3. We need clear rules that ensure our health data is collected, used, stored and disposed of in a safe and secure manner, that ensure we retain ownership and control over it, and that set out the conditions under which it can be used for public good purposes. 
  4. These rules need to be based on a set of minimum global standards, grounded on the Health Data Governance Principles,to ensure the same rights and conditions of use across countries and regions. 
  5. Join the MyDataOurHealth campaign. Find out how much control you have over your own health data by taking the  Where’s MyData?  action and then fill in the survey. Tell others about this important issue!
  6. Send a joint letter to the Ministry of Health (advocacy letter draft in [EN / FR / SP]) calling on them to endorse the Health Data Governance Principles and to sponsor or support a resolution on health data governance at the World Health Assembly in May 2024.
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