Approximately 18,000 Australians will be diagnosed with breast cancer this year and 90% will survive at least 5 years. Whilst there is universal understanding that cancer affects the health and quality of life of individuals there is limited long term evidence reported to demonstrate the impact this diagnosis has on a persons life. There is an opportunity to expand the roles of registries to inform clinical care, health service planning, policy and evaluation by establishing mechanisms for routine monitoring of patient reported outcomes. This will increase awareness by health services of the late effects and chronic side effects of cancer and its treatment, allow timely evaluation of outcomes, and increase the likelihood of an informed health service response.
Aim: To establish the viability of collecting Patient Reported Outcomes (PRO's) routinely via BreastSurgANZ Quality Audit
Methods: A proof-of-principle study will be undertaken using the South Australian cohort of the BreastSurgsANZ Quality Audit (BQA) to establish the viability of collecting patient reported outcomes routinely. A software platform developed by Envido will be used and integrated with current workflow to enable identification and periodic surveying of patients. Governance, ethical/privacy, consenting, data security and linkage process will be established. Prospective and retrospective data collection will be tested. Outcome dashboards will be developed to meet the needs of clinicians and patients. Outcome measures will include patient response rate and experience and clinician satisfaction and perceived benefits. The project will be undertaken by a multidisciplinary team including clinicians, behavioural scientists, cancer epidemiologists, consumer advocates, data specialists, and software developers.
Results: The project will demonstrate the viability of collecting patient-reported data via the BQA and will establish dashboard reporting and feedback systems that are meaningful to patients and clinicians. Opportunities for national scalability and further funding will be explored.
Conclusion: Currently there is a critical gap in the establishment of routine patient-reported surveillance which is paramount in an environment of increasing fiscal demands, health system reform and consumer driven engagement. If implemented broadly, the inclusion of patient-reported data to clinical registries will address a key gap in national cancer outcome data and provide stronger intelligence to inform multiple layers of care delivery including quality and safety reporting, auditing, direct clinical care, health economic analysis and research.