Translating academic ethics to real world practice

In this paper (open access), Maarten Jansen (Radboud University, the Netherlands), Rob Baltussen (Radboud University, the Netherlands), and Kristine Bærøe (our research group) discuss how decision makers who are required to legitimize their priority setting decisions in health to members of society can be held accountable by how they organize their decision-making process. The focus is on the special moral concern for being accountable to those who end up being adversely affected by decisions in terms of not being provided the treatment or care they would hope for. The authors translate this requirement into a checklist for real world action. This list consists of 29 reflective questions to assist decision-makers in organizing legitimate priority setting in healthcare.

The paper has emerged from earlier collaboration between Bærøe and Baltussen, and it will be part of PhD candidate Jansen's thesis. Jansen elaborates on the relevance of this work:

"Responsible health authorities frequently organize, or allow, some form of stakeholder participation in their decision-making processes. These efforts by health authorities should be geared towards ensuring that those who end up carrying the burden of the decisions are properly involved throughout the decision-making process. What authorities lack, however, are practical ‘tools’ that enable them to reflect on the implications of this claim in terms of how they are organizing their processes – or tools that can help them identify and prioritize steps in the right direction. The hard lesson is that a simple one-size-fits all approach doesn’t work, given that health authorities need tailored processes that are in tune with their local contexts. By working through our checklist they can carefully start shaping their processes in ways that take into account common concerns with regard to properly organizing stakeholder participation. 

"Doing this kind of translational ethical work is almost surprisingly challenging", says Bærøe. "The reason for that is that we have to address the conditions for making the recommendation adequately justified and practically meaningful and useful at the same time. This calls for conciliation of requirements that tend to draw in opposite directions, namely subtle philosophical arguments and calls for keeping it short and uncomplicated." She continues: "To manage this transition, I believe leaning upon different disciplinary training is extremely useful. The authors have a background in biomedical sciences and health technology assessment, health economics and philosophy, respectively, and in this work we were forced to establish a shared understanding and acceptance of the text. That process required a lot of work in terms of quite a number of drafts and discussions. At the same time, it lead to a product we all could stand behind, but none of us would be able to produce on our own."