Story by: Ishmael Barfi
To safeguard the health data of individuals, Transform Health and partners are calling for stronger regulations underpinned by ethical and human rights principles.
According to Transform Health, these stronger regulations needs to be enshrined in law to better protect the rights and responsibilities of individuals in relation to their health data.
Mathilde Forslud, the Executive Director of Transform Health is making this call as she joins partners to officially launch a global campaign on health data and rights called ‘My Data, Our Health’ to mark this year’s Data Privacy Day under the theme ‘Privacy Matters’.
Data Privacy Day is marked every year on January 28 globally to create awareness on the importance of respecting privacy, safeguarding data, and enabling trust.
The call she explained is to address the irregularities and insecurity of individual data especially on their health.
“currently we have a system of health data extractivism where individuals hand over their data and then lose control over this most intimate information,” she said.
The Transform Health Executive Director indicated that, though effective sharing of health data offers tremendous potential to strengthen health systems and improve medical outcomes, majority of people are unaware of how their data are collected, stored and used.
There is currently no globally agreed regulation guiding countries on health data to protect individuals and foster trust in health data sharing.
It is for this reason , she revealed that, Transform Health campaign aims to use ‘My Data Our Health’ campaign to encourage people to seek out their electronic health records and to find out more about the information they have.
Though some estimated 30% of all data produced is generated by the healthcare industry, 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.
Adding that, ‘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 in most countries.
On his part, the Executive Director of the Kenya Aids NGOs Consortium (KANCO), Allan Ragi noted that, “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.”
Allan Ragi, Executive Director of the Kenya Aids NGOs Consortium (KANCO) who is also campaign partner reiterated that, “effective health data governance is necessary to create trust between individuals and institutions and between institutions”.
Through ‘My Data Our Health’ campaign, Transform Health, he revealed aims to engage people and politicians in the discussion on how health data is collected, managed, used and disposed of.
Also, the campaign, through the ‘Where’s My Data?’ campaign action, is inviting people to go to their local health centre and request access to their electronic health records and digital health information.
By highlighting individuals’ lived experiences, the campaign aims to put people in the driving seat when it comes to access and control of their data, and build health systems that are more responsive to their needs.
It is on this note that, Transform Health through ‘My Data, Our Health’ campaign is inviting people and organisations to join and take part in the public 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?
Transform Health is a global coalition of organisations, individuals and institutions that advocate for the equitable digital transformation of health systems- to achieve health for all.
Read more about the campaign via bit.ly/mydataourhealth