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

Abstract

Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) 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 (2014–15). 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 disease – variously described as experimental care, personalised, precision, stratified and sub-group medicine – is accompanied by hopes for a single, standard, effective approach.

Keywords:

• Experimental
• care
• medicine
• breast cancer
• HIV

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Adaptive trial design has been defined as “a clinical trial design that allows for prospectively planned modifications to one or more aspects of the design based on accumulating data from subjects in the trial” (FDA 2018, 2).

2 While quotations from transcripts are verbatim, signaled in the text using double quotation marks, field note records from informal or group discussions are marked with single quotations.

3 Initially rejected in early 2017 by the National Institute for Health and Care Excellence (NICE) for their high cost in relation to their prospective benefit, the CDK4/6 inhibitors, palbociclib (Ibrance) and ribociclib (Kisqali), were licensed for use in the NHS in November 2017.

4 We use pseudonyms here and throughout this article.

5 We should acknowledge that NHS England have introduced a long-term strategy of Personalised Care (2019) that aims to involve patients in their care. As commentators have noted, this process can involve delegating responsibilities and work to “self-managing” patients.

6 See NHS England, “NHS Genomic Medicine Service”, https://www.england.nhs.uk/genomics/nhs-genomic-med-service/ accessed 11th November 2019.

7 Connor notes that Allan Roses, a senior executive at GlaxoSmithKline, suggested that most drugs currently on the market only worked in 30-50% of the population.

Additional information

Funding

Research in breast cancer services was supported by funding from Imperial College Healthcare Charity, the National Institute for Health Research  (NIHR) Biomedical Research Centre based at Imperial College Healthcare NHS Trust and Imperial College London, and our project, supported by the Wellcome Trust (205456/Z/16/Z), “People Like You”: Contemporary Figures of Personalisation, 2018–2022. Ethics was approved by North West - Greater Manchester West Research Ethics Committee, 18/NW/0550. Research in HIV/AIDS was funded by grants from Imperial NIHR Biomedical Research Centre, the Imperial College Healthcare Charity, and supported by the St. Stephens AIDS Trust. Ethics was approved by West Midlands - Edgbaston Research Ethics Committee, 14/WM/0147. The authors of this article would like to acknowledge the contributions of patients and staff who participated in this research and collaborated with the team, including Louise McGrath-Lone, Claudia Schoenborn, Tanvi Rai, Jane Rowlands, Christopher Higgs, R. Charles Coombes and Kelly Gleason.