The end user
The human being as a starting point, not an afterthought.
Digital care and wellbeing are for people. But in practice, systems and technology often take centre stage while the human being fades into the background. We reverse that order.
At CareCodex, the end user is everyone who actively creates, enriches or uses data in health or social care. That is a broad group, because more people are involved in care than you might think.
Who is the end user?
We distinguish four groups, from most to least important:
-
The person
Citizens, residents, patients, clients and their loved ones. They are the reason care and wellbeing exist. Everything we build and decide, we test against their needs.
-
Care professionals and social support workers
People who directly provide care, assistance and support. They are the first to notice when a system does not work in practice.
-
Staff of care organisations and networks
Such as policymakers, quality officers and administrative staff. They translate policy into practice.
-
Researchers and data experts
Who contribute to insight, policy and innovation.
This order is a deliberate choice. The system is there for the human being. Each group works in practice for the groups above them.
Why the end user is so often absent
In many digital trajectories, end users are involved only at a late stage. As testers of a system already designed. Or as recipients of a solution conceived for them, but not with them.
This is rarely intentional. Technical and administrative issues take up a great deal of space. Deadlines drive decisions. And involving people properly takes time.
But the cost is high. Systems that do not align with the reality of professionals lead to frustration. They are used less, or not at all. Solutions that do not reach citizens widen the gap between care and people. And good initiatives stall when there is no support, no matter how good the technology may be.
We believe this is not a matter of unwillingness, but of structure. As long as end users have no fixed role in design and decision-making, their involvement remains non-binding. And non-binding involvement does not lead to better care.
How we position the end user
End users determine what is needed and how that must work in practice. The technology comes after. We call this working above the bonnet.
In practice, this means that end users determine what a system must be capable of, co-decide on what is developed first, monitor whether a system is usable and accessible, and assess whether a solution really works in daily practice.
That requires more than a single consultation round. It requires a fixed, formal place in decision-making, throughout the entire lifespan of a system or standard.
The end user in governance
A formal role for the end user is not a wish. It is already established in the NEN 7522. That is the Dutch standard for how digital data exchange in healthcare is organised and governed. Governance means: who decides what, and who is responsible for what.
The NEN 7522 recognises the end user as one of the nine formal roles in the information system. This means that end users are no longer passive recipients. They are a fully-fledged party with rights and responsibilities.
More about NEN 7522 and the nine roles
The NEN 7522 describes how the governance of digital data exchange in healthcare is organised. The standard distinguishes nine formal roles, including holder, functional manager, technical manager and end user. Each role has its own tasks and authorities.
The fact that the end user has a formal role means that participation has a fixed place in decision-making. CareCodex actively works with NEN 7522 as a framework when setting up governance.
The end user as the foundation of Mission Copernicus
This vision of the end user is the core of Mission Copernicus, the movement we have developed for human-centred information provision in health and social care.
Mission Copernicus advocates for a fundamental shift: a digital infrastructure that is carried by the human being. That shift begins with taking the end user seriously. Not as a target group, but as a foundation.