The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice (...) early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving (...) patients in biomedical research aiming to address its main challenges.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in biomedical research. It should enable patients to put forward their experiential knowledge, to develop a rich view of what an envisioned innovation might look like and do, and to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation. (shrink)

An important discussion in contemporary ethics concerns the relevance of empirical research for ethics. Specifically, two crucial questions pertain, respectively, to the possibility of inferring normative statements from descriptive statements, and to the danger of a loss of normativity if normative statements should be based on empirical research. Here we take part in the debate and defend integrated empirical ethical research: research in which normative guidelines are established on the basis of empirical research and in which the guidelines are empirically (...) evaluated by focusing on observable consequences. We argue that in our concrete example normative statements are not derived from descriptive statements, but are developed within a process of reflection and dialogue that goes on within a specific praxis. Moreover, we show that the distinction in experience between the desirable and the undesirable precludes relativism. The normative guidelines so developed are both critical and normative: they help in choosing the right action and in evaluating that action. Finally, following Aristotle, we plead for a return to the view that morality and ethics are inherently related to one another, and for an acknowledgment of the fact that moral judgments have their origin in experience which is always related to historical and cultural circumstances. (shrink)