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1.
Med Humanit ; 49(1): 83-92, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35927002

RESUMEN

We explored working and living with cancer at a large research-intensive National Health Service hospital breast cancer service and adjoining non-governmental organisation (NGO). The project had three elements that were largely autonomous in practice but conceptually integrated through a focus on personalised cancer medicine. Di Sherlock held conversations with staff and patients from which she produced a collection of poems, Written Portraits At the same time, we conducted interviews and observation in the hospital, and hosted a public series of science cafés in the NGO. The trajectory of this project was not predetermined, but we found that the poetry residency provided a context for viewing participation in experimental cancer care and vice versa. Taking themes from the poetry practice, we show how they revealed categories of relevance to participants and illuminated others that circulated in the hospital and NGO. Reciprocally, turning to findings from long-term ethnographic research with patients, we show that their observations were not only representations but also tools for navigating life in waiting with cancer. The categories that we discovered and assembled about living and working with cancer do not readily combine into an encompassing picture, we argue, but instead provide alternating perspectives. Through analysis of different forms of research participation, we hope to contribute to an understanding of how categories are made, recognised and inhabited through situated comparisons. In personalised medicine, category-making is enabled if not dependent on increasingly intensive computation and so the practices seem far removed from mundane processes of interaction. Yet, we emphasise connections with everyday practices, in which people categorise themselves and others routinely according to what they like and resemble.


Asunto(s)
Neoplasias , Medicina Estatal , Femenino , Humanos , Hospitales , Antropología Cultural
2.
Sociol Health Illn ; 44(3): 624-640, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-35143700

RESUMEN

Using interview and observational data from a busy and research-intensive breast cancer service in the United Kingdom, we discuss recent developments in personalised medicine. Specifically, we show how clinical and research practices meet in clinical pathways that are reconfigured in response to changing approaches of diagnosing, monitoring, treating and understanding cancers. Clinical pathways are increasingly sensitive to changes in evidence deduced through new technologies and therapies as well as decisions based on intensive, iterative analysis of data collected across a range of platforms. We contribute to existing research by showing how the organisation of clinical pathways both maintains established clinical practices and responds to new research evidence, managing a threshold between evidence-based and experimental medicine. Finally, we invite comparisons with other forms of personalisation to understand how they depend on the 'real time' collection, analysis and application of data.


Asunto(s)
Neoplasias de la Mama , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/terapia , Vías Clínicas , Femenino , Humanos , Londres , Reino Unido
3.
Med Humanit ; 41(1): 2-7, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-26052111

RESUMEN

What can the medical humanities achieve? This paper does not seek to define what is meant by the medical humanities, nor to adjudicate the exact disciplinary or interdisciplinary knowledges it should offer, but rather to consider what it might be capable of doing. Exploring the many valences of the word 'critical', we argue here for a critical medical humanities characterised by: (i) a widening of the sites and scales of 'the medical' beyond the primal scene of the clinical encounter; (ii) greater attention not simply to the context and experience of health and illness, but to their constitution at multiple levels; (iii) closer engagement with critical theory, queer and disability studies, activist politics and other allied fields; (iv) recognition that the arts, humanities and social sciences are best viewed not as in service or in opposition to the clinical and life sciences, but as productively entangled with a 'biomedical culture'; and, following on from this, (v) robust commitment to new forms of interdisciplinary and cross-sector collaboration. We go on to introduce the five other articles published in this special issue of the journal, reflecting on the ways in which collaboration and critique are articulated in their analyses of immunology, critical neuroscience, toxicity, global clinical labour, and psychological coercion and workfare. As these articles demonstrate, embracing the complex role of critical collaborator--one based on notions of entanglement, rather than servility or antagonism--will, we suggest, develop the imaginative and creative heterodox qualities and practices which have long been recognised as core strengths of the medical humanities.


Asunto(s)
Conducta Cooperativa , Atención a la Salud , Humanidades , Ciencias Sociales , Humanos , Comunicación Interdisciplinaria
4.
Distinktion ; 24(2): 195-216, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38013838

RESUMEN

This article historicises practices called 'personalization' in the UK. It presents data from interviews with practitioners to show how business leaders, public sector managers, policy analysts, activists and others have crafted their personalizing practices through commercial and governmental work over a 40-year period. These public histories are illuminated by professional biographies, which reveal common interests in the transfer and application of technology, data and data analytics. Yet they also illuminate attempts to reform bureaucracies in public and private sectors alike during the late 20th and early twenty-first century. The article asks how mobility - of professionals and their personalizing practices - has affected the pre-existing contrast between, and separation of, public and private organizations. This article contributes to commentaries on personalization that view it as an essentially private and privatizing process. What remains of such domains once they have been crossed, and from whose perspective? This UK history raises questions for comparative histories of personalization and its synonyms elsewhere.

5.
Wellcome Open Res ; 6: 311, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-35592835

RESUMEN

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers.  Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible, Equitable and Responsible. Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation. The Engagement Framework is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the Engagement Framework prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the Engagement provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. The Engagement Framework is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes.

6.
Wellcome Open Res ; 5: 280, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33521331

RESUMEN

In this open letter we examine the implications of the coronavirus disease 2019 (COVID-19) pandemic for cancer research and care from the point of view of the social studies of science, technology, and medicine. We discuss how the pandemic has disrupted several aspects of cancer care, underscoring the fragmentation of institutional arrangements, the malleable priorities in cancer research, and the changing promises of therapeutic innovation. We argue for the critical relevance of qualitative social sciences in cancer research during the pandemic despite the difficulties of immersive kinds of fieldwork. Social science research can help understand the ongoing, situated and lived impact of the pandemic, as well as fully underline its socially stratified consequences. We outline the risk that limiting and prioritising research activities according to their immediate clinical outcomes might have in the relational and longitudinal understanding of cancer practices in the UK. Finally, we alert against potential distortions that a "covidization" of cancer research might entail, arguing for the need to maintain a critical point of view on the pandemic.

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