Health Data Governance in Ghana and the Experience of Young People

From the University of Development Studies through the Tamale Teaching hospital to Civil Society Organisations in the capital city of the Northern region of Ghana, were young people participating in the Digital Health Week Colloquium and Workshop organised by the Children and Youth in Broadcasting, Curious Minds.

Commemorating the 2022 Digital Health Week with the theme; “bridging the technical- political divide”, the opportunity was leveraged to draw young people’s attention to the essence of health data and to allow for experiences to be shared regards to how these data is protected and used for the well-being of the individuals and the entire globe.

The interaction saw participants sharing experiences regarding their health data, how they give them out, what they feel about the processes and who takes charge over storage and security.

All over the world, more than 23,000 children and young people shared how they used digital technologies to access healthcare, the benefits and risks encountered while using those technologies according to the 2021 U- Report polls on digital health revealed in a Lancet and Financial Times Commission report on Governing Health Futures 2030. Thus 88% of children and youth are using digital technologies to support their health and well-being. These only mean that, there are several tools in the digital spaces that are taking and keeping records of the health data of these ones that are in the space to get access to the care they need.

What is Health Data?

According to IGI Global which is described as a leading international academic publisher of books and other materials on business, computer science, education among others, “Health Data is every type of data related to health status, personal choice about selecting a treatment, health security or policy number, all kind of treatment reports, causes of death, socio-economic parameters regarding health and wellness, historical healthcare background such as diseases in past years, and this kind of information”.

Governance

The American Health Information Management Association (AHIMA) which is a leading voice and authority in health information has also defined data governance as the overall administration through clearly defined procedures and plans that assure the availability, integrity, security and usability of the structured and unstructured data available to an organisation. In this vein, governing health data would mean considering the people, the process and systems used to manage health information on a smaller and/or larger scale.

The essence of data for decisions in any sector cannot be undermined and even more significant in the area of health to provide information, secure commodities and equipment for treatment and save lives. From sexual and reproductive health through mental health to fitness and general well- being, individuals now more than ever continue to access information and services via digital means and there is always the outplay of data in these instances. Young people make up the most of this population that are found in the web of digital health access through different kinds of apps and sites due the nature of convenience these initiatives offer them. But the question is whether individuals are aware of who is behind the storage and usage of the data they provide in the digital spaces aside from those that are collected in confined health facilities.

Experiences collected in the Digital Health Week indicated that, people are not unconcerned about their health data, even though the level of concern differs from one individual to the other, the security of health data was a necessity to the participants that were engaged in the Curious Minds Colloquium. Some had raised that; any other data would not mean so much to them but health data was considered to be a personal and private data which poses some consequences when it ends up in the public. Such concerns have also caused the receipt of false data by organisations especially where there is a question of trust in the system. The integrity in the data governance is lost in such conditions because the reliability is not certain. Meanwhile, these practices do not affect that individual who made a choice because of a circumstance, but rather a wider population regards to health and well- being.

Just like it was stated at the Health Data Governance summit in 2021 that “Data is the lifeblood of decision-making and the raw material for accountability. Without high-quality data providing the right information on the right things at the right time; designing, monitoring and evaluating effective policies becomes almost impossible. So, too, does the ability of businesses and people to make well-based decisions. As the volumes of available data increase, quality should become the decisive factor when choosing a data source.” However, there are diverse motivating factors to the issues around providing unreliable data by clients/patients.

The key concerns with health data and governance.

In a system where data is considered a global public good for the well- being of the masses like it was indicated by the Centre for Global Development that ‘global public goods provide benefits to the people in both rich and poor countries, playing a crucial role in safeguarding social, economic and political progress as they are fundamental to managing global risks such as diseases’, it is expected that much interest is taken regarding the agenda to a degree but there are several concerns which include the following.

●   Safety

●   Confidentiality

●   Privacy and

●   Consent.

Considering the context of Ghana, the issue of safety is seen as one that needs more responsible individuals and systems because most of the experience shared by insiders from health facilities have revealed that separate departments work to collect and store the health data of clients and that shows that, the health information of patients do not only end with the healthcare service providers as some wish or expect but lurk with IT departments who have access to these data. It mostly occurs that confidentiality that is to be ensured by the facilities are breached since the information reaches more hands with an example cited of how an individual was called via phone to partake in a voluntary survey because of a condition that had been reported earlier at the health facility. Meanwhile, other experience has revealed that there are times when the data collected cannot be tracked after some time with the health facility and that leads to a worry of where that data may have ended or who may be responsible for keeping it with clients having less idea.

With the essence of data in research also, it was evident from some data officers of how the data is used with the clients having no idea but some of the young people think that there should be a degree of consent sought from the clients before usage. But there is also the public good factor that still needs to be acknowledged regardless of the individual ownership that is being asked for.

Protection

This is where the Data Protection Act that was enacted in 2012 to protect the privacy and personal data of the Ghanaian becomes important, but it rather happens that even though some individuals have concerns and wished they are addressed, not many have an idea of this act and what it seeks to do. For instance, in 2020, there were political parties that kept sending messages and calling individuals to solicit votes when those individuals had never encountered or given their contacts out to these entities. It simply signifies how unprotected the data system is and not so different from that of the health institutions.

It is also against the above concerns that there is a call to take action for global health data governance. This is aimed at ensuring a standardised approach to protecting the health data of citizens across the globe, as different states aim at protecting the people, prioritising equity and promoting health value. The governance system for health data needs more strengthening to avoid any form of unapproved disclosure and grant access to the owners of the data (patients).

Suggestions

●   There is a need for highly secured technologies to keep health data anonymous.

●   Data Protection Laws need enforcement to protect citizens’ health data.

●   Personnel in charge of operating health data systems must be trained to abide by ethics and held responsible for leaked data.

●   Young people must be educated enough to be responsible in sharing their health data on sites and apps.

●   WHO member states must advocate for a global governance structure to build trust that allows for reliable data from citizens for global decisions.

The health data of individuals are needed not only for the individual but everyone, and that is why the call for massive protection is important to enable people to share the right information with their protection fully assured.