In keeping with advancing efforts to achieve the Sustainable Development Goals (SDGs), there is the need to spare no effort that especially involves the youth.
It is for this reason that Curious Minds Ghana, a youth-led civil society organisation recently brought together a diverse team of young professionals to dialogue on how the adoption and implementation of Health Data Governance Principles can help to achieve SDG3 (Good Health and Wellbeing).
The Executive Coordinator of the organisation, Kingsley Obeng-Kyereh, stated that digital health is about accessing healthcare in a world that is interconnected, considering the fact that there is nothing safe in this world.
“We must be mindful of the negatives involved in the digitization of our health,” he stated, adding, however, that the interconnection continues to assist wherever and whenever healthcare is needed due to the matter of transfer from one system to the other to get remedial welfare.
He insisted that questions of how the information is kept and protected for the continuous support of everyone must be asked.
He reiterated that Universal Health Coverage underlines the issue of digital health but “we must all work to make things possible in relation to primary healthcare that is needed by all persons”.
Engaging members in different groups to share their experiences of health data and its governance, it was realised that all the participants had ideas of what health data means as well as its governance as some described the concept as “the collection of records or representation of medical conditions or groups with governance being the managerial role played by an individual, organisations or governments who have access to our health status and responsible for its storage and dispatch”.
Others described it as “all health information about a person and the security of that information”.
The workshop also saw participants sharing their experiences of how their health data have ever been collected at health facilities or by using an app and the kind of value they place on the data because it is supposed to be private and personal especially, when it is recorded in the health facilities.
About 80% of the participants who are young people argued that the data management systems in most health facilities cannot be trusted based on experiences shared, particularly of how some external persons get to know about their family members’ health conditions without the patients themselves making that information known.
With this, some think that having a level of ownership of their health data would help to keep the data safe and clients be made to consent before their data is shared, keeping in mind also the reports that need to be compiled by the health institutions and the policy decisions that would be made with the information recorded.
Talking about data ownership and protection, Bright Amoako Obeng, who is a Health Information Manager in the Greater Accra Region, mentioned the District Health Information Management System (DHIMS) as one that strictly protects the health data of individuals and involves a procedure that is secure in recording information from the reception of each facility through to the consultation of a doctor.
Rounding up the discussions was a presentation on the principles of health data governance that drew the attention of all on the essence of data at the global level and how total control of one’s data cannot be fully guaranteed.
There was strong advocacy for a standard global framework for all countries to comply in the quest to govern health data appropriately.
It is in this vein that participants agreed to add their signatures to the youth statement that calls on the Ministry of Health to advocate for Ghana to sign onto the draft Member State Letter, to be submitted to the WHO in requesting the Board for the inclusion of health data governance and proposed health data governance resolution, on the agenda of the Executive Board Meeting in January 2023 and the World Health Assembly in May 2023.
The discussions provided insights into how individuals must be mindful of the kind of data they make accessible to other parties, as all were encouraged to spread the message of digital health and the need to protect health data.