In this paper we present some of the main ideas and conclusions of our last two research projects, which have analysed in depth several case studies around the increasing implication of health activist groups in the production of biomedical knowledge. Using some examples from our own research, we argue that the incorporation of experiential and lay knowledges of patients is transforming biomedical sciences in different ways, producing what we term “epistemic pluralization”.
We are currently developing a research cluster focused on health activism and public participation, particularly on forms of generating knowledge and care practices from a feminist intersectional perspective. This work covers our previous project, Visions and Versions of Medical Biotechnologies (2012-2016), and the current one, Feminist Epistemologies and Health Activisms (2017-2019), both funded by the Spanish Public R+D Plan. Whereas the first aimed to map out networks and the circulation of knowledge among activist groups, the second one intends to emphasize how feminist knowledges and epistemologies transform biomedical practices. The current project has a more participatory approach both to promote forms of intervention and communication with health professionals and to walk side-by-side with collectives to generate co-operative synergies.
In the different activities and publications related to Visions and Versions of Medical Biotechnologies, we analysed the increasing importance and diversity of forms of social mobilisation around health issues by focusing on its epistemic implications: how do they transform the knowledge production and care practices in health and biomedicine? We faced that question by focusing on several case studies, primarily with trans and intersex activism in Spain, but also with other examples of how patients are increasingly intervening in the production of biomedical knowledge. In our research, we have also identified how traditional forms of scientific communication -top-down, from “experts” to “lay people”- are currently being reconfigured, through a new reappraisal of experiential knowledges which generate “hybrid” forms of knowledge that bring together personal experiences, activism and biomedical knowledge (Wehling, Viehöver and Koenen, 2015). It is in this sense that we speak of “epistemic pluralization”: as different actors and voices gain legitimacy as epistemic agents, the distinction of “expert vs. lay knowledge” blurs somewhat, or becomes more complex. Sometimes, indeed, forms of health activism become epistemic correctives identifying undone science (Hess, 2009).
Hybrid Lay-Expert Knowledges and Activist Groups
As its very name implies, the figure of the patient was traditionally constructed in modern medicine as a passive epistemic element. But patients are increasingly becoming actors in the production of biomedical knowledge. Within the social sciences two main analytical frameworks have derived from this idea: lay knowledge and lay expertise. Lay knowledge (Caron-Flinterman, Broerse and Bunders, 2005; Prior, 2003) has been used to refer to experiences, perspectives or meanings patients offer about their own illness. It also refers to their knowledge of their own body, especially the kind of practical, caring knowledge they have. Finally, it makes reference to the knowledge specifically generated by associations and support groups, as they share their experiences as “communities of practice” or as “experts in the experience” (Akrich, 2010; Rabeharisoa, 2008). Lay expertise, on the other hand, refers to processes of expertification of patients, certain individuals or groups that, in the course of their condition or illness, seek information on causes, treatment, etc. becoming, thus, a specialist, one that can “legitimately speak[ing] in the language of medical science” (Epstein, 1996: 9).
In the case studies developed by our group, we have come across both types of knowledge. Experiential knowledge becomes part of care and self-care. For instance, the knowledges that caregivers for people with Alzheimer’s have -about the previous life of the cared person, but also about the current person’s need and tastes- function collectively as forms of sustaining the person living with Alzheimer’s (Ruiz, 2015). Another example are the oral knowledges that are passed on from mothers to daughters, between female friends or through offline or online recent mother self-support groups to respond to breastfeeding issues such as mastitis treatments (Santoro and Romero-Bachiller, 2017). But experiential knowledge also becomes part of mutual self-help processes in activist groups: for example, the stories that parents of trans minors and minors with an intersex condition share about how to communicate with their children in a positive manner about stigmatised or taboo issues. We have also analysed how online forums, blogs, social networks and collective webpages, and even mobile phone group chats, are recurring sites for sharing doubts and knowledges. These sites have contributed to the recognition of such knowledges, as some have provided material for support guides for parents, giving way to not only a medical, but instead a psychosocial turn in the treatment and care of these conditions (García-Dauder, Gregori and Hurtado, 2015).
Also, very often a process of expertification of patients and relatives occurs. Informational resources on association websites are a clear example of this, as they offer accessible and understandable information, adjusted to different levels of knowledge about the condition. Expertise becomes evident as well in conferences or association meetings where medical professionals are invited: questions from the public -made up of association members or relatives- show profound insight, sometimes even discussing recently published scientific articles by specialised professionals. Thus, many association members become expert patients, especially when they are affected by less frequent pathologies, rare diseases or stigmatised conditions. In the case of both intersex and trans individuals, sometimes the medical community itself will invite them to their professional meetings -yet with varying degrees of recognition and types of participation, from experiential testimony to expert knowledge- thereby recognizing the need to learn from and with them. Some of those “expert patients” even participate in scientific journals in collective authorship articles or as co-authors with medical professionals. In some cases, health activists and expert patients have even become instructors for medical professionals on psychosocial and gender issues -as has been the case with trans and intersex activists (Ortega et al., 2018). In some other cases, this has facilitated an inversion of the subject-object order of knowledge relationships: the very “objects of knowledge” -i.e. trans and intersex collectives or activists- have become real “experts” on the “subjects of knowledge” -doctors, scientists (García-Dauder and Romero-Bachiller, 2012). These “experts on experts” are groups with a deep understanding of the scientific literature, and they critically discuss and analyse the practices of the professionals treating them, sharing all this information with other people. Sometimes they even “experiment” with their own bodies, by regulating dosages or favouring certain prescriptions over others, for example, as in the case of male trans activists who reduce their testosterone dosage or advocate for the re-incorporation of Reandron© 1000 ml -an injectable prescription dosage of testosterone- to the list of drugs that are publicly funded in Spain (Ortega et al., 2018).
A concrete experience of committed articulation and production of hybrid knowledge we recently developed was the organization of a workshop to train psychotherapists to work with intersex people. The workshop took place in September 2017 and was organised along with a Spanish congenital adrenal hyperplasia association we have been working with for years. The training was given by two team researchers along with an adult with an intersex condition, and two mothers with girls with another condition and members of the association. The training aimed to give the participants an understanding of the specific characteristics and psychological needs of living with an intersex condition. Afterwards we participated with the trained psychotherapists in the First Psychosocial Meeting of CAH -Congenital Adrenal Hyperplasia- by organising three workshops for girls, adults and mothers and fathers that addressed issues such as needs, emotions and communication. Boundaries between expert and experiential knowledge, and the premise that knowledge circulation is unidirectional and top-bottom, were both heavily questioned through these events.
Therefore, and as Wehling, Viehöver and Koenen (2015) have pointed out, we are increasingly confronted with hybrid forms of knowledge: scientific/biomedical knowledge is transformed and adapted to a patient’s own experience, a process which is both individual and collectivized through “communities of practice” (Akrich, 2010). In the collective learning process found in patient associations, shared advice and testimonies are inseparable from scientific knowledge -even in the most critically active collectives. In a similar fashion, the dissemination of accessible biomedical information to patients is increasingly impregnated with experiential knowledge -stories, testimonies and accounts from other patients. These are ultimately examples where experiential and academic knowledge work together, creating epistemic pluralised networks and developing new understandings of these conditions.
A larger porosity between scientific and “anti-scientific” knowledge can be found in some of our other research projects. In the context of childbirth, upbringing and breastfeeding, apart from the fact that there are different professional conflicts over unqualified practice -gynecologists, midwives, doulas- it is not easy to differentiate between medicalised knowledge and other “alternative”, “traditional” or “experience-based” knowledges. In focus groups of inquiry with recent mothers that we carried out in 2015, the mothers’ discourses showed there was not a unequivocal opposition between medically legitimised knowledge and “alternative” options. Mothers were involved in different forms of what we term activation of care with a multiple, juxtaposed and complex use of medical recommendations, alternative strategies, and experiences offered by friends, family, mobile phone group chats of recent mothers, or members of internet forums (Santoro and Romero-Bachiller, 2017).
Yet a hybridisation of knowledge is also produced on the “medical” side, as experiential knowledge is increasingly incorporated into scientific literature. The proliferation of qualitative methods in health research, for instance, gives renewed value to experiential narratives as evidence. Medical training given by patients is not an oddity, nor is their participation in medical conferences. Patients are not only listened to: sometimes their knowledge has been incorporated as an epistemic corrective, transforming medical practices, and helping to develop “undone science” (Hess, 2009). In the case of intersex activism, this has given way to a genuine paradigm shift, moving from a strictly biomedical paradigm to a psychosocial and human rights one, which has opened up bioethical and legal questions on medical practices (García-Dauder, Gregori and Hurtado, 2015).
On the other hand, there are also entrepreneurial actors turning their attention to the “experiential knowledge” of patients and family. Web platforms open social networks where patients and relatives can “share” their experience of “living with a condition” -such as the website Personas que [People that]. This altruistically shared information is formalised, quantified and organized by the companies managing these sites, and is then purchased by pharmaceutical companies and other bio-industries. This process introduces new agents, and the need to analyse the relationship between associations and these bioeconomic organizations (Lupton, 2013): patient experiential knowledge becomes here a commodifiable product in the bioeconomy (Pavone and Goven, 2017).
Finally, most of these knowledges are inseparable from care practices. Embodied, materialised and moving through the body, care practices are found in a concrete ensemble of relational practices: a “know-how”. For example, knowledges built, shared and mobilised by caregivers for Alzheimer’s patients become practices: practices of recognition, memory and care. Yet, from these very practices, hybrid knowledges also emerge. Knowledges that may help to provide better care (Ruiz Marcos, 2015).
Feminist health activism as epistemic corrective: Activism-based Evidence
A type of activity in activist health groups which we would like to consider in certain detail is the production of knowledge that questions medical science and dominant paradigms -their conceptualisation of etiology, prevention, diagnosis, treatments. This was specifically looked at in the project Visions and Versions of Medical Biotechnologies, where we focused on opponent groups (Callon and Rabeharisoa, 2003), such as trans activist and some intersex collectives that aim to depathologize their conditions, generating epistemic “correctives” to dominant research and pressing science to act with greater social responsibility (Wehling, Viehöver and Koenen, 2015).
The role of this trans and intersex activism groups is especially relevant in promoting shifts in paradigms and in improving scientific practice. Yet, we are not talking about “evidence based activism” (Akrich, O’Donovan and Rabeharisoa, 2015), that is, those “hybrid” forms of biomedical/experiential knowledge from which activists defend the “evidence” of their demands. Rather, what we see here is “activism based evidence”: that is, a problematization of the very evidence itself and, with it, of the very biomedical paradigm -especially when the main objective is to depathologize certain conditions.
We have also analysed the knowledge generated in the International Network for Trans Depathologization -a collective that emerged in the context of Spain which later, through different mutations, become internationalised. We have specifically focused on their production of epistemic correctives, and mostly on their critiques of the DSM-5 and CIE-10, where transexuality is still included in the catalogue of mental illnesses -although in the DSM-5 the term “disorder” has been eliminated. This critical task is complemented as well by concrete contributions, in the form of assistance protocols and alternative support procedures, such as the Best Practices Guide to Trans Health Care in the National Health System (2010) (Ortega, Romero-Bachiller and Ibáñez, 2014). A parallel process is occurring in the case of intersex organizing, where pressure from activists and support groups is causing not only a re-evaluation of the standards of care -to more patient centered ones that are based on informed consent- but also a shift to a psychosocial and human rights paradigm that is breaking down the exclusively biomedical paradigm that existed previously, which was more centered around surgeries and hormonal treatment for bodily “normalization” (García-Dauder, Gregori and Hurtado, 2015). Therefore, associations exert a mediating role between multidisciplinary approaches -biological, psychological and social ones- by pressuring science to act with greater social responsibility and by generating not only biomedical knowledges and practices, but also ethical and legal ones (Wehling, Viehöver and Koenen, 2015).
In our new project, Feminist Epistemologies and Health Activisms, which started in January 2017, we continue inquiring into this “scientific evidence” that emerges from health activism, by investigating recent cases where feminist social movements and collectives have been transforming practices and knowledges, thus contributing to more inclusive science (Epstein, 1996) and stronger objectivity (Harding, 2015). A new and interesting line of action has been seeking to recover the “lost history” of how the Women’s Health Movement -although never self-identifying itself under such name in Spain- and the LGBT movement in the 1970’s contributed to the improvement of knowledge on women’s health and bodies and on sexual diversity -thus, favouring the depenalisation of contraception (1978), homosexuality (1978), and abortion (1981) in Spanish society.
New researchers and new case studies have been incorporated into this project: the transfer of reproductive capacity through ova donation, human breast milk donation, participation in clinical trials and some other forms of what Cooper and Waldby (2015) have coined as “biolabour”. All these cases bring to the fore new questions, as they erode clear lines of demarcation between exploitative and depriving forms of participation in bioeconomies and empowering forms of participation in health associations (Santoro and Romero-Bachiller, 2017). These cases also move away from individuals acting in the bioeconomy through isolated decision-making and from empowered associations participating collectively in the production of health knowledge, to more informal and diffuse, yet also collective, spaces of interaction, knowledge production and participation. Spaces created by and generative of affects, bonds and reciprocity. Concrete attention to details in these cases becomes essential, as we find more entangled realities this way: sometimes forms of solidarity, belonging and obligation become strengthened by care bonds, some of which become articulated beyond traditional kin lines. Caring becomes enmeshed in chains of exchange which cannot be detached from bioeconomical interest, constructions of altruism, and emerging personal bonds. Affect, interest and obligation are all entangled in forms of “activating care” (Santoro and Romero-Bachiller, 2017), as we are illustrating in our current research on ova donation to fertility clinics (Lafuente, 2017) and on human breast milk donation (Romero-Bachiller and Santoro, in press). New questions are urgently emerging here about interactions of everyday life and the overflowing of strict definitions and clear cut perspectives, and they are being addressed by these cases.
They can all be considered examples of what Nancy Tuana (2006) identified as the move away from “epistemologies of ignorance” to “epistemologies of resistance”, stressing not only the role that health activism can play in making areas of ignorance visible, but also how it can produce paradigm shifts or “hidden innovations”. With this research we aim to reevaluate knowledges derived from embodied collective relational experience to open up to informal forms of sociality and solidarity as well as to the dense and complex bonds and relationship they provide.
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