According to some estimates, 30% of all data produced is generated by the healthcare industry. Yet most people are still unaware of how this data is collected, who is collecting it, where it is being stored, what it is being used for, and why. As individuals, our rights to own and control our health data and our responsibilities to make this available to health planners and researchers, are not clearly defined or implemented across most countries.

CYIB-Curious Minds is launching the My Data Our Health campaign on health data and our ownership over it with Transform Health. We are inviting our community to join us and to take part in the public conversation on health data 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?

“Currently we have a system of health data extractivism where individuals hand over their data and then lose control over this most intimate information,” said Mathilde Forslund, Executive Director of Transform Health. “We need stronger regulation underpinned by ethical and human rights principles, that enshrine in law the rights and responsibilities of individuals in relation to their health data. My Data Our Health hopes to contribute to that outcome.”

“At the heart of the My Data Our Health campaign is the issue of trust in those collecting and using our health data, and ensuring it is used to keep us healthy – now and in the future.” said Allan Ragi, Executive Director of the Kenya Aids NGOs Consortium (KANCO), a campaign partner. “Effective health data governance is necessary to create trust between individuals and institutions and between institutions – for example, to facilitate the sharing of data between healthcare organisations.”

How can you engage in the campaign?

• Where’s My Data?

Take the Where’s My Data? campaign 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?

• 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

Head to the campaign webpage to find out more ways you can engage!

How is Curious Minds engaging in this campaign?

During Digital Health Week, we converged over 60 young people across Ghana for a conversation on their lived experiences regarding their health data, and its governance. After which participants developed and signed a statement calling on the Minister of Health in Ghana to sponsor a resolution on health data governance at the World Health Assembly.

In the next few months, we will be engaging the Ministry of Health, convey parliamentarians, train journalists/media professionals and involve other CSOs with hopes of creating greater awareness among general public, parliamentarians and the media, as well as increasing political will toward developing a health data governance framework, underpinned by human rights.

Follow Curious Minds on Twitter, Instagram, Facebook and Linkedin to join the conversation!