Over the past 20 years, the participation of laypersons or representatives of civil society has become a guiding principle in processes of research and innovation. There is now a significant litera...

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)

Against the background of an increasing dependency of governance on specialized expertise and growing calls for citizen participation, this study discusses solutions to the tension between knowledge and democracy. It asks: Which institutions and practices add to striking a balance between knowledge-based decision-making and the involvement of the affected? Based on the social studies of science, knowledge and expertise as well as democratic theory with a focus on participation, representation and inclusion, the study first identifies quality criteria of expertise and (...) participation, and then, with reference to two quite different, up-and-coming empirical answers to the epistemic-democratic tension, spells out the conditions of realizing these criteria in practice. In focus are a) highly complex, multi-layered structures of policy deliberation and advice that combine expert panels with a range of public input channels and b) the involvement of ‘lay experts’ into policy-making through participatory knowledge practices such as ‘service user involvement’ or ‘citizen science’. The study underlines, inter alia, how claims that transcend individual viewpoints and integrate a multiplicity of experiences and concerns are of particular democratic and epistemic value; it points to the key role of organized advocacy groups when it comes to credibly combining a mandate to speak for others with useful and reliable experience-based expertise; and it illustrates the relevance of conflict-minimising institutions for the making of public policies. (shrink)

The biomedical industry relies on the skills of animal technologists to put laboratory animal welfare into practice. This is the first study to explore how this is achieved in relation to their participation in implementing refinement and reduction, two of the three key guiding ethical principles––the “3Rs”––of what is deemed to be humane animal experimentation. The interpretative approach contributes to emerging work within the social sciences and humanities exploring care and ethics in practice. Based on qualitative analysis of participant observation (...) within animal research facilities in UK universities, in-depth interviews with ATs, facility managers, and other stakeholders, and analysis of regulatory guidelines, we draw a contrast between the minimum required of ATs by law and how their care work not only meets but often exceeds these requirements. We outline how ATs constitute a key source of innovation and insight into the refinement of animal care and the reduction of animal use, hitherto not formally acknowledged. Exploring AT care work as an example of ethics in practice makes an original contribution to broader debates within health care and animal welfare about how technology, regulation, and behavior can foster and sustain a “culture of care”. (shrink)

Research in science and technology studies has analyzed how patients’ groups engage in practices that connect biomedicine and patient experience in order to become involved in the shaping of biomedical research. However, there has been limited attention to the affective dimensions of such practices. Based on ethnographic fieldwork with a gynecological cancer patients’ group in Sweden, this article focuses on practices that aim to influence researchers and research institutions to prioritize biomedical gynecological cancer research. It analyzes how “affects” are woven (...) through these practices and pays attention to the entanglements of affects, biomedical research, and lay experience they involve. The article explores the relation between the gynecological cancer patients’ group and biomedical research as a set of material-semiotic practices of “moving evidence.” These practices of moving evidence enact gynecological cancer as under-researched; collect and produce new “evidence”; “mobilize” the evidence at public events, in interactions with biomedical researchers, and in different online settings; and entangle affects with biomedical and experiential evidence to enact gynecological cancer biomedical research as a matter of concern. (shrink)

This paper is the English translation and adaptation of my inaugural lecture in Amsterdam for the Chair Anthropology of Everyday Ethics in Health Care. I argue that the challenges in health care may look daunting and unsolvable in their scale and complexity, but that it helps to consider these problems in their specificity, while accepting that some problems may not be solved but have become chronic. The paper provides reflections on how to develop a scientific approach that does not aim (...) to eradicate bad things but explores ways in which to live with them. Crucial in this quest is the attention to how we conceptualize problems, and whether this is specific enough for addressing present day concerns. I propose an anthropology of everyday ethics as a way to study people’s everyday ways of handling a variety of goods in practice. I draw specific attention to exploring aesthetic values in everyday life amongst these, values that are used abundantly to qualify events in everyday life but rarely theorized in philosophy or social science. (shrink)

Epidemiology for and by Indigenous peoples uses quantitative and statistical methods to better document Indigenous health concerns, and is oriented around providing data for use in advocacy to promote Indigenous health equity. This advocacy-oriented, technoscientific work bridges the often distinct social worlds of Indigenous communities, professional public health research, and public policy-making. Using examples from a multisited ethnographic study in three settings, this paper examines the forms of expertise that researcher/practitioners enact as they conduct research that simultaneously harnesses epidemiology’s persuasive (...) power in social worlds like public health and public policy, while also critically challenging legacies of colonialist erasures and misrepresentations of Indigenous health in population statistics. By demonstrating how these continual translations across multiple social worlds enact expertise, this analysis offers a new integration of discussions about both coloniality and expertise within science and technology studies. By focusing on the experiences of technoscientific professionals themselves, this study’s findings also pose new questions for broader STS conversations about how activism is shaping the production of knowledge about health in the twenty-first century. (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. (shrink)