Transform Health, a global coalition of organisations, has launched a campaign on people’s health data and rights to allow individuals access and control over their health data.
The campaign dubbed: “My Data, Our Health” is aimed to ignite a discussion on the need for legislation on the collection, storage, access, and use of people’s health data.
A statement signed by Madam Mathilde Forslund, the Executive Director of Transform Health, and copied the Ghana News Agency (GNA) in Wa, said in the current health information extractive regime, people lose control over their health data after it had been given out for health care delivery and access.
Transform Health is a global coalition of organisations, individuals, and institutions that advocate equitable digital transformation of health systems to achieve health for all.
The launch of the campaign was also to mark Data Privacy Day, an internationally recognized day that is commemorated annually on January 28, to create awareness and promote data privacy and data protection best practices.
They said there was currently no globally agreed regulation guiding countries on health data to protect individuals and foster trust in health data collection and sharing.
“Currently we have a system of health data extractivism where individuals hand over their data and then lose control over this most intimate information”, the statement said.
It observed that effective sharing of health data offered the potential to strengthen health systems and improve medical outcomes but that most people were unaware of how those data were collected, stored, and used.
The statement stressed that the campaign was geared towards contributing to public discussions on the need for stronger regulation underpinned by ethical and human rights principles that dictated the rights and responsibilities of individuals concerning their health data.
It observed that the rights of individuals to own and control their health data and their responsibilities to make them available to health planners and researchers were not determined in most countries, including Ghana.
The statement also quoted Mr Allan Ragi, Executive Director of the Kenya Aids NGOs Consortium (KANCO), a campaign partner, as saying: “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.”
“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,”it added.
The statement also encouraged people to, through the “Where’s My Data?” campaign action of the “My Data Our Health” campaign, request access to their electronic health records and digital health information from their local health centres.
“By highlighting individuals’ life 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,” the statement indicated.
The coalition called on the people and organisations to join the “My Data Our Health” campaign by involving in the public conversation to answer pertinent questions on health data including:
“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? and how can we ensure this ownership and control is respected and protected?”
The public has also been encouraged to learn more about the My Data Our Health campaign via bit.ly/mydataourhealth.