My aim is to give an insight into an emerging line of thought according to which the European (and North-American) societies are transforming themselves into innovative living and tinkering laboratories of care. The article draws on four thematic units from the 4S/EASST Conference in Barcelona 2016, across which a “career” of the concept of “care” could be remapped:
- The keynote plenary presentation by Madeleine Akrich on “Inquiries into experience and the multiple politics of knowledge” (Akrich, 2016)
- “Environments of care: understanding and shaping care by other means”, T152 session
- “Care Innovation and New Modes of Citizenship”, T062 session
- “STS and normativity: analyzing and enacting values”, T049 session
Experience vs. expertise
“Patient-centred” care and research are alternative ways of generating “knowledge by other means”, states Akrich. Undoubtedly, there are different forms of producing knowledge, and they all value both experience and expertise, even if the combination of these two might vary from one type of (scientific) research to another. On the one hand, experience of users could be understood as their own expertise intended to bring new knowledge for the “evidence based activism” (Rabeharisoa et al., 2014). On the other hand, experience of the users and patients can appear only as targeted action, with reduced scientific value. It can nonetheless show itself as intermediary tool informing the expertise of the researchers. When following both types of logic, science and technology emerge as mediators between people and their diseases; they are mediators of new experiences.
Towards the patient/user centeredness
But what did determine the switch towards the patient or user “centeredness” as source of “knowledge by other means” in STS? A literature review from the 1980’s onwards shows the evolution of perspectives over the last thirty years.
Innovation in knowledge was traditionally related to laboratory life (Latour, Woolgar, 1979). Translation of practices and networks of human and non-human actors worked together in order to produce explanations and innovative technical and scientific practices. If Latour and Woolgar (1979) experienced the life of a laboratory in order to show the “social construction of scientific facts”, more recent studies attempted to transform the “real” life into their laboratory. One initial solution was to relate technological innovation success to experiences and experiments within confined spaces, with determined rules (Akrich et al., 1988; Woolgar 1991). But this approach showed its limits as the real life conditions of use could change the results obtained within too “controlled” environments.1
During the last fifteen years, another solution took progressively shape, the “living labs”. They are mainly related to the economic or business-centred innovation areas (e.g. European network of living labs2) and often feature their interdisciplinary research (e.g. MIT Living Labs3). For the professionals within this field, the formula of the “living lab” covers those methods developed to involve users in innovation. From a methodological point of view, their multiple attempts at defining the “living labs” remained nonetheless related to confined rules and strategies, not always able to acknowledge the complexity in practice (Law, Mol, 2002), despite the co-creation and co-design processes at work. At the same time, the user became the central figure, as opposed to an “assumed” technical and scientific expert (Ballon & Schuurman, 2015: 10).
Additionally, the same need to see how actors participate to their environment helps maybe to better explain recent research import of theories of care into STS. In fact, talking about co-creation and co-design determines a dynamic point of view on practices, but it won’t be enough to understand what makes people adopt a socio-technical artefact, the processes at stake, the attachment and the adjustments in front of the objects, or the values the actors mobilize into action. Further on, a change of perspective appears when the researcher draws the boundaries of the socio-technical world that emerges in front of her. No trial or test is deliberately imagined into a care theory approach. No rules are given at first, but they can be observed through tinkered methods or methodologies later on. Finally, this stream of research pays attention not only to human or non-human actors, but also to the environment-in-the-making: individuals engage with their material surroundings, take care of each other, tinker activities and shape interdependences. One can therefore call this perspective “a tinkering and living laboratory”, different from a schematic or systemic “living lab” as previously presented.
A living laboratory of care?
A possible link could therefore be established between patient and user-centeredness in STS, and care theories and practices. All of them focus on the centrality of the collectives of users/patients into an environment-in-the-making. Though a “conceptual” unified definition of care is hard to give, the diversity of practices related to it help us to better grasp its social and political implications. Care is not only about health issues, but also about citizens’ participation to the public space, it is about understanding complex environments.
The environment of care as basis of collective action
It is indeed difficult to talk about care in abstract terms, without referring to situated practices in actual environments of care. This ecological approach draws on different actors engaging through objects into action. The presence of technical artefacts becomes important in the relationship between beings, objects, and places, as shown all along the session “Environments of care: understanding and shaping care by other means”. Care becomes a collective laboratory that both bounds together and unfolds itself throughout different actors. Furthermore, we discover that “the logic of care does not start with individuals, but with collectives” (Mol, 2008 quoted in S. Nicolae’s presentation on “Care and normativity. Exploring a relationship’s career”).
For example, the environments of birth participate to the general universe of care (C. Colosseus). While birth pertains to a medicalized setting in contemporary Germany, an alternative online space of “stories of giving birth” takes shape, in which the future mothers share birth-related practices. The mobilized narratives show means of translating and organizing birth experience that act as forms of help to “improve care in medical obstetrics”, complementary to the midwives activities. Futures mothers and medical professionals thus form together an “ephemeral” collective over the birth time.
The care as political value in direct relationship to the citizenship
Ephemeral or permanent collectives of care are explored further on. Even if it comes from the health sphere, care is essentially political, as it often organizes itself around topics defined as public or social problems. Therefore a direct link is usually established between care, innovation practices, and citizenship.
The image of a “participatory society” was often evoked during the session on “Care Innovation and New Modes of Citizenship”. The presentations addressed “practices of participation” that determine different “modes of citizenship”. Even if participation was seldom defined and rather suggested through the implementation of technological innovation expected to improve communication or daily activities, the contribution of F. Henwood on “Care innovation and participation in mHealth development: the HIV ‘app’”, or the presentation of K. Ovsthus and B. Ravneberg on “Implications of Introducing Robotics into Home Nursing Care” offered rich insights for further discussions.
Different democratic normativities appear within stakeholders’ engagements in care innovation. “Self-monitoring” as form of “responsible citizenship” (H. Langstrup), but also “independent living programmes for people with intellectual disabilities” (J. Moyà-Köhler and I. Rodriguez-Giralt) show autonomy as value of a good citizen. Care givers work to empower the vulnerable individuals who, at their turn, by gaining more independence in action, “take care” of their fellow citizens, and even of the general “welfare system”, by saving their support efforts.
Formal and informal engagement in care is also observed within small or large-scale interactions. Important examples offer for instance the “telecare innovations” used at the family level (H. K. Andreassen, C. Pope, C. May) or the digital collectives of mothers who develop “practices of associating and sharing knowledge with others” on medical matters like Umbilical Cord Blood Banking and mastitis in Spain. In this case, “sharing knowledge with others” activates care towards a collective action (P. Santoro, C. R. Bachiller). The general role of institutions is however less visible in shaping the value of care until now.
Care beyond the frontiers of humanity
Not all the presentations from the track dedicated to “STS and normativity: analyzing and enacting values” explicitly talked about care, but a good majority took it into account as they organized themselves around the manner in which STS take position in relationship to care. A majority of presentations took up the “registers of valuing” emerging in practice.
The “ageing society” was a constant theme in the three sessions about care mentioned in this article, but was especially present when the normativity questioned its specific actors: “eldercare workers”, “older citizens”, “Euroseniors”. Multiples values seem to appear after a closer study of the practices of care. “Old age” is not only about illness or dependence, but also about dignity or quality of life, e.g. in the proposal submitted by M. Bødker on “The potentially fit – enacting value in old age” or in the presentation of J. Robbins-Ruszkowski on “Valuing Life’s Ends: Old Age in Postsocialist Poland”.
Contrasting the previous session on care, the importance of institutions was underlined and was directly linked to the production of norms. Institutions were discussed for instance as alternative collective care providers, i.e. sources of “non-family-based” practices in China (L. Prueher). Moreover, the robots seem to acquire socio-political dimensions when tested in a “real-life setting” through a results-driven approach with “political interest in welfare technological innovation” (M. H. Bruun). And there is also an “institutionalized palliative care” through which the “naturalization” of “good death” can be observed (B. Pasveer). Beyond the questions of valuing or naturalization, the frontiers of humanity (Remy, Winance, 2010) are raised as main issues related to care practices, i.e. when comparing a neonatal care unit, an animal laboratory, and a dementia nursing home (M. N. Svendsen, L. Navne, M. Seest Dam, I. Gjødsbøl).
Innovative methods and methodologies
Finally, the presentations used a diversity of methods and methodologies, from less usual ones like meta-ethnography (H. K. Andreassen, C. Pope, C. May) to more traditional, but “revisited”, ethnographic accounts, literature reviews, individual or group interviews. As shown by J. Pols, STS include the study of knowledge practices, but dare to take a step further: “studying an object is simultaneously shaping it through material research practices and through concepts and methodologies”. These remarks pave the way towards a dynamic living laboratory process put to work when studying care in practice.
I thank Laura Centemeri, Paola Diaz and Stefan Nicolae for their careful reading of this article and their insightful comments. I would also like to express my gratitude to the EASST Council for their 4S/EASST Conference in Barcelona 2016 support award.
1 The interest of this device was previously discussed: “[…] laboratory experiments are simplificatory devices: they seek to tame the many erratically changing variables that exist in the wild world, keeping some stable and simply excluding others from argument.” (Law, Mol, 2002, 2). Simplifications nonetheless “are used as a basis for action” (Law, Mol, 2002, 3).
2 “The European Network of Living Labs (ENoLL) is a worldwide community of Living Labs with a sustainable strategy for enhancing innovation on a systematic basis. ENoLL aims to support co-creative, user-driven research and contribute to the creation of a dynamic European innovation system, with a global reach.”
3 “MIT Living Labs brings together interdisciplinary experts to develop, deploy, and test – in actual living environments – new technologies and strategies for design that respond to this changing world. Our work spans in scale from the personal to the urban, and addresses challenges related to health, energy, and creativity”