4 research outputs found
Unsettling the treatment imperative? Chemotherapy decisionâmaking in the wake of genomic techniques
Social scientists have argued that a treatment imperative shapes experiences of biomedicine. This is evident within oncology, where discourses of hope are tempered by persistent fears surrounding cancer. It is within this context that genomic decision-making tools are entering routine care. These may indicate that a treatment is not appropriate for a particular disease profile. We draw on qualitative interviews and observations centred on gene expression profiling to consider the implications of this technique for the treatment imperative in early breast cancer. Influenced by sociological perspectives on medical technologies, we discuss how fallibilities of established tools have forged a space for the introduction of genomic testing into chemotherapy decision-making. We demonstrate how high expectations shaped patientsâ interpretations of this tool as facilitating the ârightâ treatment choice. We then unpick these accounts, highlighting the complex relationship between gene expression profiling and treatment decision-making. We argue that anticipations for genomic testing to provide certainty in treatment choice must account for the sociocultural and organisational contexts in which it is used, including the powerful entwinement of chemotherapy and cancer. Our research has implications for sociological perspectives on treatment decision-making and clinical expectations for genomic medicine to resolve the âproblemâ of overtreatment
Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities
As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities
Strengthening the equity focus of applied public health research: introducing the FOR EQUITY platform
Objectives: Much applied health research pays insufficient attention to potential unequal impacts across social groups or is typically focused on a single dimension (e.g. socio-economic status), rarely considering the intersecting social processes driving inequalities (e.g. racism, sexism, classism). All health research needs a strong intersectional equity focus in order to inform action to reduce health inequalities as well as improve population health. Study design: Focus On Research and Equity (FOR EQUITY) is a new Web-based platform aiming to strengthen the intersectional equity focus of applied health research. Methods: The platform was developed in collaboration with members of the public, practitioners and researchers working internationally. The development involved a systematic review of academic and grey literature, a series of workshops and user testing. Results: FOR EQUITY encompasses (1) a Health Inequalities Assessment Tool, with an intersectional perspective on inequalities; (2) a FOR EQUITY Guidance Inventory providing access to a range of international research toolkits and guidance; and (3) a FOR EQUITY Library including case studies illustrating how researchers have attempted to integrate an equity lens into the research process and more general resources on health inequalities. Conclusion: FOR EQUITY can support researchers to strengthen the equity lens in their studies to make research evidence more relevant for action to reduce social and health inequalities. However, a single focus on toolkits is unlikely to sufficiently address the barriers to embedding equity in research. A mainstreaming strategy to transform the very roots of the âinstitution of researchâ is required. © 202