Creation of a comprehensive, unitary, episode-structured, visually rich data system of 12,000+ breast cancer patients with 30 year follow up for MDT decision assistance

Amrin, Minu, Cable, David, Hales, Alan and Rew, David (2012) Creation of a comprehensive, unitary, episode-structured, visually rich data system of 12,000+ breast cancer patients with 30 year follow up for MDT decision assistance. European Journal of Surgical Oncology, 38 (11), 1137. (doi:10.1016/j.ejso.2012.07.238).

Abstract

Introduction: Clinical and MDT decision making for patients with breast cancer and other chronic diseases is handicapped by the lack of reliable long term follow up; of robust measures of final outcome, including accurate death certification; and of tools for the ready visualisation and radical simplification of complex data sets.
Method: We have used a comprehensive manual card index of 12,000+ patients, treated within this Centre since 1980, to populate a novel episode based data system, (the e-Breast Card Index, e-BCI). We have assessed and recorded the “true” cause of death (COD), crosschecking a 100Gb Trust repository of contemporary e-documents, built up since 1996, against national death notifications. Innovative interactive data visualisation tools present the speciality-structured life histories of each and every patient on a single screen (the “Life-Lattice”) and the linear episodic history of each patient from diagnosis to final outcome on a single “Cancer Life-Track”. Patient accrual and analysis is continuous and progressively automated.
Results: In six months during 2012, 30 years of handwritten and legacy records have been collated into a unitary digital data system with evolving functionality and graphically rich, locally developed “lifeline” visualisation tools for individual patient records and cohort analysis. Timeline structuring of primary presentations, recurrences and the appearance of metastases provides immediate visualisation of clinical outcomes in relation to treatments. 5,800 of the 12,000 patients have died of all causes, which are recorded in detail.
Conclusions: The Southampton e-BCI creates a benchmark for novel, intuitive, clinician and MDT focussed decision assist tools. It uses temporally structured data from a range of sources to seek out the “ground truths” in the relationship between therapeutic inputs and definitive outcomes in a large, longitudinal, heterogeneous, and well validated cohort of breast cancer patients.

This record has no associated files available for download.

Contributors

Author: David Rew

Download statistics