There have been intensified calls on governments to prioritise the development of a global health data governance framework that will form the basis for national legislation on the collection, management, storage, usage, and disposal of health data.
The calls have become necessary as the current lack of agreed regulatory standards to govern the collection and use of health data had created uncertainty about how health data could be used within countries and across borders.
A statement signed by Mr Samuel Queye, the Programmes Manager of Curious Minds Ghana, a member of the Ghana Health Data Governance (HDG) Coalition, and copied to the Ghana News Agency (GNA) in Wa, said the lack of the framework ‘means that (health) data is not being maximised for the public good.’
The Curious Minds Ghana, a young people-led organisation, brought together representatives of selected organisations actively involved in people’s health and well-being advocacy, especially champions of Universal Health Coverage, to strengthen and sustain in-country campaigns and education on the need for HDG Framework.
The statement added that the HDG framework gap also risked leaving many people behind in developing new medicines and technologies or planning for the provision of health services to the wider population.
‘Across the world, the level of access and control people have over their electronic health data is limited by the lack of clarity by patients and providers of their rights and responsibilities in relation to people’s health information.
‘According to some estimates, 30% of all data produced is generated by the healthcare industry.
Yet most people remain unaware of how this data is collected, who is collecting it, where it is being stored, what it is being used for, and why. Health data remains poorly regulated at national level’ the statement said.
The statement said people’s uncertainty and concern over who had their health data, how it was being used and for what purpose, could erode trust between people and health service providers.
Earlier this year, Transform Health launched the ‘My Data Our Health’, a global campaign led by community-based organisations, to raise awareness and galvanise action on the issue of health data, and to encourage a public and political conversation around health data collection and use.
The statement quoted Mathilde Froslund, Executive Director of Transform Health, as saying: ‘Health data lies at the intersection of personal privacy and security, and the protection and well-being of the population.’
‘Therefore, (there is) the need to ensure a regulatory system regime that people know about and trust, and where institutions can have public approval and support to access and use our most intimate personal data for the public good while ensuring our rights and privacy are protected’, she added.
The statement said those regulatory standards need to be underpinned by equity and human rights-based principles such as the Health Data Governance Principles, which had already been endorsed by over 140 organisations and governments.
It said the HDG framework would lead to stronger and more equitable health systems, improved health emergency and pandemic response, and improved research and innovation as well as advance the UHC goals.
Source: Ghana News Agency