Determining Missing Key Elements in Oncology Information System to Improve Patient Experience and Clinical Care

Abstract

Cancer (malignant neoplasms/tumours) is a generic term used for a collection of diseases occurring in different parts of the human body, mainly starting from one organ (primary site) and then spreading into other body parts creating new tumours (secondary site/metastasis). Cancers like leukaemia that arise from cells that naturally circulate throughout the body are defined by their morphological appearance under the microscope or more recently like all cancers by the genes or the expressions that are abnormal (Van’t Veer et al., Nature 415(6871):530, 2002; Guyon et al., Mach Learn 46(1–3):389–422, 2002). Normal cells go through a process of development and subsequently die (Elmore, Toxicol Pathol 35(4):495–516, 2007). Cancer can be disease of excessively rapid cell growth but can also be due to the failure of cells to die and thus accumulate (Suresh, Acta Mater 55(12):3989–4014, 2007). By a process of changes in the genes and their expressions, cancers initially require the ability to grow locally and then with the additional genomic change acquire the capacity to spread (Rycaj and Tang, Cancer Res 75(19):4003–4011, 2015). More recently, the focus of cancer research has moved to cancer microenvironment which are noncancerous cells that have a significant influence on the growth of cancer (Martin et al., Oncotarget 7(32):52575, 2016; Vogelstein et al., Science 339(6127):1546–1558, 2013). There were approximately 45,782 deaths (28.9% of all deaths) due to cancer in 2016, and it is expected to increase to 48,586 deaths in 2018 (Cancer Australia, Cancer in Australia statistics. What is cancer [cited 12 Sept 2018]. Available from: https://canceraustralia.gov.au/affected-cancer/what-cancer/cancer-australia-statistics, 2018a). The management of cancer is traditionally divided into prevention, early detection by screening diagnosis and treatment followed by either survivorship care or palliative care depending on the treatment outcome (Portenoy and Lesage, Lancet 353(9165):1695–1700, 1999; Eschenbach et al., Cancer 80(9):1805–1807, 1997; McCanney et al., J Natl Compr Canc Netw 16(7):801–806, 2018). Oncology information systems have to reflect the rapidly evolving knowledge about the basic nature of cancer, the various stages of cancer prevention treatment and follow-up, and the complexities of the systems that support that process. This chapter compares three different well-known international oncology systems already delivering high-value patient-centred care to oncology patients from the prospective of Victorian and Australian patients. Specifically, this work examines functionality, usability and interoperability of these systems within the Australian healthcare environment as well as their incorporation with already available systems and equipment. Key missing elements and creating/adding new platforms to adjust them to better function for patients, clinicians and healthcare providers are also highlighted.