William McKellin

Assistant Professor

Relevant Degree Programs

Affiliations to Research Centres, Institutes & Clusters


Graduate Student Supervision

Doctoral Student Supervision (Jan 2008 - Nov 2019)
Suffering individuals and the sustainable collective : rare disease drug access and care in Canada (2020)

This dissertation is about how public drug payers, pharmaceutical company representatives, policymakers/researchers, patients and families, and patient advocates make and manage meaning around controversial costly ‘orphan’ drugs for rare genetic disease in Canada. Based on 18 months of multi-sited ethnographic fieldwork across Canada, I argue that practices around rare disease drug development and access have created two competing moral/ontological frames. When a drug costs hundreds of thousands to millions of dollars a year, some focus on relieving the ‘suffering individual’ no matter what the costs. Others focus on the importance of the ‘sustainable collective’ to protect the health care system. These individual/collective politics work to control the circulation and use of extremely expensive rare disease drugs within a publicly funded but fragmented health care system. These are framed by social actors as different versions of ‘Canadian values,’ which throws rare disease patients into the epicenter of a difficult politics of deservingness for social investments. My analysis centers around the questions: 1) what do high drug prices do? 2) what are the different politics of care performed in rare disease drug access disputes? 3) how do practices around costly drugs affect and inflect the experience of being ‘rare’ for patients and families? Working at the intersections of medical anthropology and science and technology studies, I show how this individual/collective binary tension is situated in economic conditions of financialized pharmaceutical development and discourses of Canadian nation-making around the public/private tensions of the health care system. The chapters in this dissertation juxtapose ethnography of ‘macro’ level negotiations and practices of rare disease drug resource allocation with the ‘micro’ level experiences of families learning to live with and care for disease among emerging options for treatment. In doing so, I show that this suffering individual/sustainable collective binary works to separate patients from wider questions of collective concern vis-à-vis the health care system and the welfare state. However, paying attention to the ways that the care needs of patients and families get simplified within these politics points to other possibilities for care in drug development and health system relationalities.

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Sick with sugar: the sociocultural dimensions of managing diabetes in a semi-urban Indian Trinidadian community (2019)

This dissertation comprises ethnographies and narratives of the ways in which Indian Trinidadians in Debe, Trinidad negotiated their life-worlds, life-course expectations, and ethnic identities around Type 2 diabetes mellitus with family, food, and religion as central themes. In overview, this research explores how Type 2 diabetes mellitus, popularly known as “sugar”, is constructed and responded to, as well as the impact of inequities in access to healthcare on people’s ability to manage this disease. Diabetes is the second most common cause of death in Trinidad and Tobago, and has highest estimated prevalence among Indian Trinidadians. Much of the discourse in Trinidad blames high local rates of Type 2 diabetes mellitus-associated mortality and morbidity on unhealthy patient practices and lifestyles. Through participant observation, interviews, and archival research, I explored normative biomedical notions of disease and untangled who is affected by a diabetes diagnosis, how they are affected, and what they do when their lives change, or to change their lives in this context. This research revealed some ways in which overly simplistic notions of patient autonomy projected upon complex, enmeshed societies and polities can be translated as ineffective recommendations for disease management, producing unintended and detrimental changes to people’s life-worlds. Understanding diabetes and its management in Debe required not only understanding the pathological or biological disease process, but more crucially, the explanatory models of people with this diagnosis, how they coped with associated illness, and the crucial communities of care that facilitated therapeutic efforts. Particularly important were narratives of persons with diagnosis of diabetes, and their caregivers. The case narratives produced are grounded in the ethnography of an economically heterogeneous community that has undergone many transitions in the recent past, including the rise in the rates of diabetes and resultant transformations of everyday socialities. These stories are therefore also inherently concerned with temporality on different scales: the progression of a disease over time, the changes in an individual life course over time, and the temporal shifts in a community as it moves from a shared, agricultural past to an uncertain and multitudinous future.

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Learning and quality improvement: nursing in the pediatric intensive care unit (2017)

Maintaining a high quality of care in a Pediatric Intensive Care Unit (PICU) is a constant challenge. Continual 24/7 staffing, ongoing staff turnover, and the constant introduction of new equipment and procedures in a highly technologically-dependent unit requires continuous learning to deliver and improve the quality of children’s care. While all staff consider continuous learning important to maintaining and improving care, learning as quality improvement is made most explicit when new nursing staff are hired and incorporated into the PICU. In this dissertation, I investigated the process of learning by individuals in the interactive social environment of the PICU to answer the following questions: How does learning occur among the newly hired nurses in the PICU? And, how does learning contribute to quality improvement? In this mixed method inquiry, I employed ethnography, Social Network Analysis and simple descriptive and inferential statistical methods to explore process of learning among the newly hired nurses in Western Canada Hospital. I found that learning among newly hired nurses happened through face to face interactions in the context of two main activities: Orientation sessions and their Preceptorship. The most significant learning for the newly hired nurses, however, happened during their Preceptorship. Learning in the Preceptorship was social and experiential as they moved from legitimate peripheral participation in the multi-disciplinary and complementary social environment of the PICU into full participation as members of the PICU Community of Practice (CoP). This learning required the transformation and development of their individual and collective identity, as their preceptors, fellow nurses, and other staff employed scaffolding to mentor them through their constantly evolving Zone of Proximal Development (ZPD). Social and experiential learning activities became the basis for continuous quality improvement (CQI). I conclude that, in the PICU, quality improvement is the tangible manifestation and product of social and experiential learning. Rather than a sequence of corrective actions, in its most effective form, quality of care is improved through scaffolded ongoing learning activities in the authentic setting of a CoP. I recommend the unit to adopt a “learning together” sociocultural approach with scaffolding as key component for successful learning and CQI.

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Applying ethnographic methodologies & ecology to unveil dimensions of sleep problems in children & youth with neurodevelopmental conditions (2016)

Willis Ekbom disease/restless legs syndrome is a relatively well-known neurological disorder in adult and paediatric medicine; however, the possibility of its presentation as familial early onset chronic intractable insomnia has not yet been recognized. I investigated the possible causes of intractable insomnia in children and youth with neurodevelopmental conditions. Through my studies of medical anthropology and educational psychology, I learned to apply qualitative methodologies in my clinical explorations, namely: a) ethnographic exploration of the ecology of paediatric intractable insomnia; b) the operationalization of this ethnographic exploration as a therapeutic emplotment concept in clinical practice, and c) the creation of new methodological tests and tools for structured behavioural observations as further development of the therapeutic emplotment concept. Application of these concepts led to the development of a functional sleep and wake-behaviours assessment model. This model exceeds the current clinical practice of categorical sleep and/or wake diagnoses and the predominantly daytime-focused explanatory models of developmental paediatrics, child psychiatry and mental health.My research has privileged me with becoming the first physician to identify Willis Ekbom disease/restless legs syndrome in children with neurodevelopmental conditions, who suffer from early onset chronic intractable insomnia, in a methodologically reproducible way. This research also enabled me to demonstrate that unrecognized Willis Ekbom disease/restless legs syndrome leads to cascades of medical diagnoses and medication prescriptions causing iatrogenic harm. Weaning children off medications and increasing their wellbeing and performance after addressing their sleep problems became the proof of concept.The Willis Ekbom disease/restless legs syndrome story in children with neurodevelopmental conditions is a modern parable, illustrating how conventional categorical diagnoses with overemphasis on daytime behaviours can produce systemic gaps in healthcare. While conventional medicine facilitates a spectrum of diagnoses that are applied based on training culture, symptoms that are not in alignment with the standard repertoire are not recognized and diagnoses are missed. Understanding this parable and finding applicable answers for how such systemic errors can be avoided in mainstream medicine in the future has taken me seven years, and is still a work in progress.

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Permeable Bodies: Children, Cancer, and Biomedicine in Argentina (2016)

The vast improvement in survival rates in childhood cancer, especially in childhood leukemia, has expanded expectations of survival. Surviving cancer is the result of invasive and life- disrupting treatments. To understand the long and taxing medical journeys of these children living with cancer this study traces children and families’ experiences at Hospital Infantil (public Children’s Hospital) in the City of Buenos Aires, Argentina. It examines how children and families as well as hematologists, communicable disease specialists, and palliativists struggle with the treatments and care for these children. This thesis asks: How does a “sick child” overcome a life-threatening illness such as a cancer and its painful treatments to become a “cancer survivor” living “life without illness” in the global south, particularly in a country like Argentina? This question leads to an anthropological reflection on the role of the body, especially children’s bodies, in cancer treatment, palliative care, and cure. It pays careful attention to issues of corporeality and subjectivity. The thesis examines how bodies work interactively while being the object of invasive and painful biomedical interventions. These interventions not only affect children but also their families and the professionals themselves.This ethnography investigates the potentials and perils of pediatric cancer treatment in its specific Argentinean context and the importance of carefully looking at the body to understand children, families, and professionals’ practices that aim for a life without cancer. By focusing on the production of “permeable bodies” this study argues that cancer treatment turns children’s bodies into permeable bodies, bodies painfully turned inside out, as a way of producing knowledge and an urgent therapeutic relation that stretches in multiple dimensions. Children become the embodied objects of cancer treatment.

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Families' experiences with medical research for pediatric rare diseases: a qualitative ethnographic study of parents and children participating in clinical trials for Duchenne muscular dystrophy (DMD) (2014)

The biopharmaceutical industry has recently expanded its focus on developing new cures for rare diseases. As a growing number of personalised genomic treatments are tested in clinical trials, there is uncertainty about how to account for patient perspectives, and how to measure functional changes reported by patients and caregivers. The illness experiences of patients and families are also being reshaped as they adopt roles as collaborative stakeholders and participants in clinical studies.This dissertation examines these changes using data from qualitative ethnographic research conducted with families of children with Duchenne muscular dystrophy, a progressive and fatal genetic disease diagnosed in boys. Canadian and American families were followed using semi-structured interviews and observational methods as they participated in clinical trials testing a genomic treatment for DMD, called ataluren (formerly known as PTC124). Ethnographic work was also carried out with physicians, patient-advocates, and other professionals engaged in clinical neuromuscular research.The dissertation contributes to scholarly understanding of families’ everyday experiences in the clinical trial, the significance and meaning of investigational treatments from the patient perspective, and the social context in which pharmaceutical development for rare diseases occurs. I show how genetic research is reconfiguring patient communities and altering moral sensibilities about treatment and care, by revealing “lucky mutations” and new axes of biosocial commonality and difference. I explore the paths families take to the clinical trial, and the “stories of waiting” they tell about their experience in it. Finally, I examine how families navigate the uncertainty and liminality of their experience as trial subjects. I discuss how the trial unsettles taken-for-granted social roles, constraining clinical relationships and leaving parents to construct the significance of an experimental treatment in the context of limited information. In so doing, parents assemble and tell “narratives of efficacy” while administering study-drug to their children, drawing on their observations and those made by others. Though parents’ narratives are often dismissed as mere anecdote, I suggest they also offer insight for developing more personalised approaches to clinical research and outcome measurement for rare diseases, by restoring focus on the nuance, idiosyncrasy, and context of families’ experiences with investigational treatments.

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Womens Reproductive Illnesses and Health Seeking in a Bangladeshi Village (2013)

This dissertation explores women’s health seeking behaviors during reproductive complications in rural Bangladesh drawing on Bourdieu’s Theory of Practice. Based on a year of ethnographic fieldwork in a northern village of the country, where four types of health care services—biomedicine, homeopathy, kabiraji (ayurveda), and folk treatment—are available, it explores how women define illnesses and seek therapies for reproductive health. It shows that women’s health seeking and obtaining health services are influenced by their authoritative knowledge, cultural practices, therapy management groups, kin networks, household economics, education, and gender inequality. In the case of reproductive complications, women first try to understand the nature and causes of the problem based on their cultural knowledge. They categorize illnesses into four categories—osukh, dushi, jadu, and gojob—with the help of their therapy management groups. The women with high economic, cultural, and social capital are more likely to categorize reproductive complications as cases of osukh and lean toward seeking biomedical treatment while the women with low economic, social, and cultural capital are more likely to categorize illnesses as cases of dushi or jadu and lean toward seeking folk healers.When an illness is a case of dushi, jadu, or gojob, women prefer a folk healer for treatment. The women with high economic, cultural, and social capital prefer a folk healer of their same status while the women with low economic, cultural, and social capital prefer a healer who is “reliable” and “accessible”. When an illness is a case of osukh, women can seek biomedicine, homeopathy, or kabiraji for treatment. The women with low economic, social, and cultural capital first pursue cheaper options like kabiraji and homeopathy, and seek biomedicine when these options fail to cure the disease. On the contrary, the use of biomedicine by women with high economic, cultural, and social capital is influenced by their therapy management groups, household priorities, and the social capital of their households. This dissertation contributes to the area of anthropology of women’s health that highlights women’s subjectivity, their gendered access to forms of symbolic capital, and the role of authoritative knowledge in health seeking.

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Master's Student Supervision (2010 - 2018)
Changing Chinese family and elder care: the practice of filial piety among ethnic immigrant families in Vancouver (2018)

Drawing on ethnographic research conducted in 2017 with Mandarin-Speaking Chinese senior migrants in Vancouver's downtown Chinatown, this thesis examines how the notion of filial piety and forms of intergenerational reciprocity are reconfigured and understood in the context of the shift of social support for the elderly shifting from the family to the state. Specifically, through income assistance and subsidized housing provided by the government, and assisted by a broad network built through friends, neighbours, and churches, the paper describes how welfare resources and social support provide a means for Chinese seniors to act strategically to deal with changes and family tensions for the sake of their families as well as for their own. My study of Chinese seniors however, suggests that it is possible for a sense of family value to coexist with a sense of individualistic values such as personal independence and lifelong productivity that are appreciated in a modern society. The forms of different values that emerged are not a reflection of dualism between the East and the West; rather, I argue these different forms of values are intertwined in overlapping process of modernism and traditionalism in immigrants to Canada. This thesis examines how intergenerational family relationships are affected by the availability of government-sponsored senior support programs, which are a resource that enables families to resolve tensions through the negotiation of coexisting values.

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What are we saying and what are they learning: How language implies "competence" and professional identity (2013)

Gee (2005) notes that in enacting a socially recognizable identity, people integrate “language, actions, interactions, ways of thinking, believing, and valuing”. In order to do this, however, medical students must learn how to interpret broad swaths of information and grasp which “language, actions, interactions, ways of thinking, believing, and valuing” are considered relevant to their emerging professional identities. Although ethnographies of medical student learning have been previously undertaken, they have not studied how identity is emergent through everyday recurrent conversational interactions.An activity theory stance was used to conceptualize medical student learning on a paediatric clinical teaching unit as socially elaborated and continuously produced. Preceptor beliefs concerning desirable student qualities, case presentation content, and teaching practices were developed from thematic analysis of semi-structured interviews. Using these findings as a contextual frame, a microethnography was conducted to observe and record student case presentations and signover participation. Through a conversation analysis lens, these events were transcribed and read to understand how students’ language use changed regarding information organization and the degree and detail to which information was included. During early clinical training, medical students accommodate rapidly to normative speaking practices through repeated interactions with their preceptors. These enable them to “do being” a novice professional in legitimated ways and manifest the beginnings of professional communicative competence. Far from a faithful reproduction of professional competencies, however, performances of competence are critically dependent upon relationships and contexts. How students learn to talk about sick persons as patients in contextually relevant ways is not superficial mimicry of a certain vocabulary but rather a broader adoption of practices and participation in shared understandings enabling them to talk in certain ways. In so doing, they reproduce cultures of biomedical practice that foreground patients as problems to be solved, struggle to contextualize sickness in the wider lived experience of families, and may unintentionally dilute effects of initiatives such as family-centred rounds. Articulating how students learn to participate in sociocultural norms through language use is a critical first step towards deeper curricular reforms seeking to establish a more harmonious balance between practices of patient care and clinical medical education.

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Expensive drugs for rare diseases: an anthropological analysis of the cultural, political, and economic dimensions of metabolic disease (2012)

In the context of Canada’s publicly funded universal health care system, access to potentially life-saving and/or life lengthening orphan drugs costing anywhere from $100,000.00 to $850,000.00 per patient per year is a complicated matter. This study is an anthropological examination of the debates surrounding ‘expensive drugs for rare diseases’, a term that has come to represent the costly treatments developed for rare metabolic diseases like Mucopolysaccharidosis, Pompe Disease, Fabry Disease, and Phenylketonuria. This study was conducted in British Columbia, Canada. It is based on several months of participant observation in hospital, industry, and patient advocacy contexts, as well as 14 semi-structured interviews conducted with the different stakeholders in the debate: patients and families, health care professionals, representatives of the provincial government’s Ministry of Health, pharmaceutical companies, and patient advocacy groups. This study looks at discussions of authority, responsibility, and rights to health care/health technology. It examines how complex systems of relationships shape these discussions in a particular time and place, and how the competing cultural models of publicly funded health care and profit-based pharmaceutical policy and industry operate in the context of extremely expensive drugs. The body of literature on orphan drugs in the social sciences/humanities is very underdeveloped, and there are no known comprehensive social scientific/ethnographic studies of the metaphors, constructs, and cultural context of debates surrounding orphan drugs/expensive drugs for rare diseases. This study attempts to fill some of these gaps by looking at the complexities of different stakeholder arguments and their structural and discursive context. In attempting to reconcile and solve the problems of accessibility to EDRD, the different stakeholders directly implicated in the debate mobilize culturally shaped notions evidence, accountability, fairness, and responsibility. This study demonstrates that the problems, pitfalls, and provisional solutions articulated by the different people implicated in this debate throw in to relief the many contradictions between orphan drug policies, neglected diseases, drug regulation/assessment practices, and the relationship between pharmaceuticals and society. These frameworks and competing cultural models are creating tensions that may be irreconcilable with a publicly funded health care system.

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Family, loss, and place: everyday experiences of hereditary cancer in a First Nation community (2011)

This thesis examines how people from a First Nation community, where a unique hereditary BRCA2 mutation has been identified, perceive their risks for genetic disease. The study is based on participant observation and interviews with people from the reserve (mainly women) who have received genetic counseling and testing, as well as those who have not. Additionally, people on the reserve are worried about the affect of environmental toxins on cancer in their community, a concern that predates the identification of the BRCA2 mutation. Using a grounded theory approach, this thesis argues that cancer in this community is experienced in relation to changing roles in the family, the loss of family members due to cancer and other causes, and sense of place and its affect on views of cancer. The result is a sense that the community as a whole may be just as “at risk” as the individuals and families that have the identified mutation.

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