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)

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)

It is widely accepted that translational research practitioners need to acquire special skills and knowledge that will enable them to anticipate, analyze, and manage a range of ethical issues. While there is a small but growing literature that addresses the ethics of translational research, there is a dearth of scholarship regarding how this might apply to engineers. In this paper we examine engineers as key translators and argue that they are well positioned to ask transformative ethical questions. Asking engineers to (...) both broaden and deepen their consideration of ethics in their work, however, requires a shift in the way ethics is often portrayed and perceived in science and engineering communities. Rather than interpreting ethics as a roadblock to the success of translational research, we suggest that engineers should be encouraged to ask questions about the socio-ethical dimensions of their work. This requires expanding the conceptual framework of engineering beyond its traditional focus on “how” and “what” questions to also include “why” and “who” questions to facilitate the gathering of normative, socially-situated information. Empowering engineers to ask “why” and “who” questions should spur the development of technologies and practices that contribute to improving health outcomes. (shrink)

Translation as philosophical program: An explorative reviewWhat does the concept of translation mean in the expression ‘translational neuroscience’? What are the different steps, or components, in the translation of neuroscientific findings to psychiatry? There are serious concerns about the validity and productivity of the traditional idea of a translational pipeline, starting in the fundamental sciences (chemistry, molecular and cellular biology) and ending in the practice of clinical medicine, including psychiatry. The article defends the thesis that the difficulties in the traditional (...) approach result, at least partially, from insufficient reflection on the philosophical premises upon which the concept of translation is based. The linear pipeline model is strongly determined by the traditional biomedical approach to disease. The translation crisis signifies some of the limitations of this approach, especially in the realm of clinical practice and patient experience. The biomedical model suggests that illness manifestations should be conceived as causally determined expressions of an underlying biological derailment or dysfunction. This model lacks the language and conceptual tools to address the role of contextual and person-bound factors in the manifestation of illness. It is only recently that personalized and context-sensitive approaches to psychopathology have gained scientific attention. In the wake of this conceptual and practical reform, network-like approaches to translation have emerged. These network approaches are based on a different conception of transdisciplinarity. They address all stakeholders, by asking them what kind of translation they need. Stakeholders are not only scientists and clinicians, but also patient- and family support groups; and parties that are responsible for the institutional embedding, the financial and logistic infrastructure, and the legal frameworks that support psychiatric care. It is the interaction between science (as producer of knowledge) and the contexts that are supposed to benefit from this knowledge, that should be put at the centre of conceptual reflection. The degree and fruitfulness of this interaction will be decisive for the future of both psychiatry and clinical neuroscience. Philosophy can play an important role in this interaction, by making explicit underlying logical and practical tensions and ambiguities in this interaction. (shrink)