Bowel Cancer Australia has launched a scientifically validated and patient-centred approach to bowel cancer care that’s as accessible as a smartphone or personal computer.
It’s not a cure, but it has the potential to improve patient outcomes and extend survival,1,2 and simply involves patients regularly answering validated online questionnaires about their symptoms and side effects.
My Bowel Cancer, My Voice is a patient-friendly and HIPAA compliant3 tool that enables patients to communicate how their diagnosis and treatment is affecting them, from their perspective, using questionnaires based on the internationally recognised ICHOM Colorectal Cancer Standard Set4 of patient-reported outcomes (PROs).
PROs encompass data reported directly by patients about how they feel and function – for example, symptoms, performance status, distress and quality of life.
“My Bowel Cancer, My Voice demonstrates our commitment to giving real meaning to the term ‘patient-centred care’, by prioritising the concerns patients consider to be most important,” said Bowel Cancer Australia CEO Julien Wiggins.
“PROs can help specialists deliver treatment and care that is more personalised, responsive and effective,” Mr Wiggins said.
Scientific research shows specialists miss around half of patients’ symptoms during cancer treatment.5,6 As a result, patients can suffer because of poorly controlled symptoms (e.g., dyspnoea, dehydration, pain, nausea/vomiting, diarrhea, constipation, fatigue) that are known to drive preventable ER visits and hospitalisations,7,8 and can lead to treatments being delayed or missed.
Recording patient-reported outcomes electronically in real time and allowing specialists to review longitudinal PRO reports can enhance patient-specialist communication, reduce emergency department utilisation, improve patients’ quality of life and lengthen survival.9,10
The online questionnaires can be completed at home or in the waiting room in less than 15 minutes, and specialists can view patient responses, along with a detailed scoring summary, within the My Bowel Cancer, My Voice clinician dashboard.
- JAMA. 2017 Jul 11, doi: 10.1001/jama.2017.7156.
- JAMA. 2019 Jan 22, doi: 10.1001/jama.2018.18085.
- Automatically encrypted, stored securely and complies with HIPAA (Health Insurance Portability and Accountability Act), PHIPA (Personal Health Information Protection Act), the Australian Privacy Act 1988 (Cth) and the General Data Protection Regulation (GDPR) (regulation (EU) 2016/679), ISO 27001.
- The Colorectal Cancer Set covers all bowel cancer patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) being treated in the public and private health system.
- J Natl Cancer Inst. 2009;101(23):1624-1632. doi: 10.1093/jnci/djp386.
- Health Qual Life Outcomes. 2010;8:104. doi: 10.1186/1477-7525-8-104.
- J Oncol Pract. 2018 Mar, doi: 10.1200/JOP.2017.028191.
- J Clin Oncol. 2011 Jul, doi: 10.1200/JCO.2010.34.2816.
- Implementation of Patient-Reported Outcomes in Routine Medical Care. American Society of Clinical Oncology Educational Book 2018 :38, 122-134.
- Journal of Clinical Oncology, DOI: 10.1200/JCO.2019.37.15_suppl.6509