Past-futures in experimental care: breast cancer and HIV medicine

Abstract

argue that "experimental care" in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018-2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013-14) and, prompted by these earlier findings, an interview study in HIV services . We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of diseasevariously described as experimental care, personalised, precision, stratified and subgroup medicineis accompanied by hopes for a single, standard, effective approach.

Personalising clinical pathways in a London breast cancer service

“…These pathways required constant work, as we have described, as well as arduous evaluation against criteria of evidence, safety and care that are written into standards and enforced through professional and legal regulations. We have documented tensions, uncertainties and expectations that are generated for patients and staff adapting to an understanding of cancers, which is constantly updated (Cambrosio et al, 2018; Day et al, 2021). A more dynamic stratification that responds to cancer evolution affects how the service is managed, navigated and evaluated.…”

“…Interviews were recorded and transcribed verbatim, coded and analysed in NVivo12. The integration of these varied data enabled fuller interpretation: interview material was extended with observations of participants across different settings, while fieldwork notes were elaborated in the light of individual and collective views and explanations (see Day et al, 2016Day et al, , 2021.…”

“…Definitions of personalised or precision medicine differ in emphasis but agree on the importance of a 'learning healthcare system' with inbuilt characteristics of continuous optimisation and calibration. This logic depends on serial testing and retesting, especially in disease conditions that are ill-understood (see Day et al, 2021). For example, NICE now recommend retesting hormone receptor status when services detect metastases, in addition to regular monitoring.…”

“…Translational priorities to conduct research that can be applied rapidly in clinical settings have led to the creation of more targeted treatments, seen by many as a key component of ‘personalised’ or ‘precision’ medicine in the United Kingdom and internationally (see Cambrosio et al, 2018; Day et al, 2021; Hedgecoe, 2006; Keating & Cambrosio, 2003, 2011; Tutton, 2012). Commentaries in social and clinical sciences have also highlighted the intensity, speed, and scale of investment in research and development, including the synthesis of clinical, behavioural, and high‐throughput genomic sequencing data (Cambrosio et al, 2018; Kerr et al, 2021; Leonelli & Tempini, 2020; Richardson & Stevens, 2015; Stevens, 2013; Tempini & Leonelli, 2021).…”

“…These perspectival renderings capture how health care dynamically stratifies patients into evolving cancer types and differentiated journeys, according to changes in research evidence, service structure and resources, as well as patient‐level changes that may also combine diverse health conditions and comorbidities. Our focus on the daily work of coordinating these pathways shows that the combination of new with existing elements of pathways produces a sense of differential rates, rhythms and tempos of action and expectation (Day et al, 2021; Feiler et al, 2017; Kenny et al, 2021; Tutton, 2012). While it is to be expected that the combination of ‘new’ and ‘old’ methods of diagnosing, monitoring and treating disease as well as pacing and costing the associated work will have unexpected as well as predicted results, we also aim to contribute to the existing literature by asking what might count as the ‘right’ or ‘real time’ tempo, or timeliness, of medical and other personalising practices.…”