Diagnosis can be both a 'diagnostic moment', but also a process over time. This paper uses secondary analysis of narrative interviews on ovarian cancer, antenatal screening and motor neurone disease to explore how people relate assembling procedural, spatial and interactional evidence before the formal diagnostic moment. We offer the idea of a diagnostic assemblage to capture the ways in which individuals connect to and re-order signs and events that come to be associated with their bodies. Building on the empirical work of Poole and Lyne (2000) in the field of breast cancer diagnosis, we identify how patients describe being alerted to their diagnosis, either through 'clues' they report picking up (often inadvertently) or through 'cues', perceived as a more intentional prompt given by a health professional, or an organisational process. For patients, these clues frequently represent a breach in the expected order of their encounter with healthcare. Even seemingly mundane episodes or behaviours take on meanings which health professionals may not themselves anticipate. Our findings speak to an emergent body of work demonstrating that experiences of formal healthcare during the lead-up to diagnosis shape patients' expectations, degree of trust in professionals, and even health outcomes.
Bibliographical noteAcknowledgements: with thanks to Aíne Kelly, for organising the original workshop hosted at Green Templeton College, Oxford, from which this paper emerged; to all the other workshop participants; to Julie Evans who conducted the ovarian cancer interviews; and to all the people who took part in an interview about their health and illness experiences. We are also grateful for comments from our anonymous peer reviews which considerably strengthened the paper.
Funding for the original datasets used came from: the Motor Neurone Disease Association and the National Institute for Health Research Service Delivery and Organisation programme [08/1610/123]; the NHS National Screening Programme; and Cancer Research UK [C7663/A2903]. Louise Locock is supported by the NIHR Oxford Biomedical Research Centre and is a theme lead on the NIHR Oxford Diagnostic Evidence Cooperative.
The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
- patient experience
- qualitative research
- secondary analysis