Imperial College London; Goldsmiths, University of London
An Ethnography of Research and Participation
‘Personalised’ approaches are transforming the treatment of breast cancer and we explored developments in a research-intensive London hospital trust. We followed up a previous study of the breast cancer pathway (conducted 2013-14 at Imperial College London Healthcare NHS Trust) to learn about changes in the last 5 years. We explored staff and patient perspectives on two translational research studies. And finally, we gained an understanding of broader perspectives on personalisation by evaluating participation and public involvement in Science Café meetings and through a Poetry Residency with Di Sherlock at Maggie’s West London, which is associated with the Trust. We described developments in personalised medicine and associated ideas about the person and their health, including the role of participation and what people think about the collection, use and sharing of data. In 2020-21 we extended this study in the breast cancer service. This allowed us to understand how the COVID-19 pandemic affected the organisation and delivery of personalised medicine and research.
Ethics was approved by NHS Health Research Authority, North West—Greater Manchester West Research Ethics Committee, 18/NW/0550.
For a short summary of our research, download our booklet Personalised Breast Cancer Medicine and Healthcare (2022).