Children and Youth In Broadcasting – Curious Minds, a youth-led media advocacy organisation focusing on the rights and development of young people, has stressed the need for a health data governance (HDG) framework to be developed and adopted by governments, particularly Ghana, through a World Health Assembly resolution
The framework, the group said, must be underpinned by equity and rights-based principles. In addition, it can be developed through a transparent and inclusive multistakeholder process, including the meaningful engagement of civil society and communities.
It made the call during a media personnel and influencers’ training on Health Data Governance at Crystal Palms Hotel in Tesano, Accra. It was held in partnership with Young Experts: Tech 4 Health, and Transform Health.
Speaking to participants during the training, the Executive Coordinator of the group, Kingsley Obeng-Kyereh, explained that the training is aimed at enabling media personnel to appreciate the campaign for the adoption of a global health data governance framework and contribute to the awareness creation that gets institutions and individuals concerned about using health data.
He said the support for stronger and more effective HDG had gained momentum across a wide range of stakeholders, particularly among those concerned with maximising the public value of health data.
He, therefore, urged the media to help unlock the public value of health data whilst safeguarding rights and building trust in the process of health data sharing.
According to him, a solidarity-based approach to health data that gives people greater control over their data, ensures data is harnessed for the public good and counters extractive practices.
He suggested that there should be clear governance structures for data use, driven by a core set of equity and rights-based principles. This, he argued, are key elements of policy maturity in virtual health- care delivery.
In doing this, he stated, digital health should be developed with a core set of principles including accessibility, privacy, security and confidentiality.
Another facilitator, Samuel Quaye, who is the Programmes Manager of the group, said under the current health information extractive regime, people lose control over their health data after it had been given out for health care delivery.
Samuel Quaye stated that the framework would lead to much-needed regulatory standards that countries like Ghana could adopt into national legislation to ensure the equitable governance of health data.
He emphasised 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.
He 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.
He said the framework would lay the foundation for improved public trust in health data systems in which individuals feel protected, respected and in control of their own data, while allowing institutions of health and well-being to use such data for the public good.
He further appealed to the media to ensure sufficient understanding of the urgent need for health data governance framework, and to raise awareness on the need for cooperation from government to sponsor or support a resolution on health data governance at the World Health Assembly.
Some of the media personnel, who shared their lessons after the training, said it has boosted their capacity to include issues of health data governance in their publications and increase their motivation to write stories about it.
“The HDG training has also increased our motivation as media professionals’ to write stories about health data and its application. We have also been well acquainted with the work being done by Transform Health and YET4H to promote responsible and effective use of health data through the adoption of health data governance framework by the World Health Organization Executive Board,” the participants expressed.