Improving outcomes for Aboriginal and Torres Strait Islander people with cancer requires a systematic approach to understanding patients’ experiences of careMonica Green A C , Joan Cunningham A , Dianne O’Connell B and Gail Garvey A
A Wellbeing and Preventable Chronic Diseases Division, Menzies School of Health Research, Charles Darwin University, 190 Gipps Street, Abbotsford, Vic. 3067, Australia. Email: email@example.com; firstname.lastname@example.org
B Cancer Research Division, Cancer Council New South Wales, PO Box 572, Kings Cross, NSW 1340, Australia. Email: email@example.com
C Corresponding author. Email: firstname.lastname@example.org
Australian Health Review - https://doi.org/10.1071/AH15214
Submitted: 10 November 2015 Accepted: 1 May 2016 Published online: 7 July 2016
Indigenous Australians experience a greater burden of cancer than other Australians, but there is little systematic information about their experiences of cancer care. Patient-centred care is increasingly recognised as one of the core domains of quality care, alongside clinical effectiveness and patient safety. Qualitative studies have identified significant issues relating to Indigenous patients’ experiences of cancer care, but these data are often insufficient to inform and evaluate health service improvement. We need to establish appropriate methods that will lead to systematic, routinely collected, accurate, population-based data on the experiences of care of Indigenous people with cancer, and determine how best to translate these data into improvements in the delivery of care to this population. Genuine Indigenous leadership and involvement will be necessary, with the whole approach underpinned by the primary aim of improving health outcomes for this population.
References Australian Institute of Health and Welfare (AIHW). Cancer in Australia: an overview 2014. Cancer series no. 90. Catalogue no. CAN 88. Canberra: AIHW; 2014.
 Australian Institute of Health and Welfare (AIHW). Australian burden of disease study: fatal burden of disease in Aboriginal and Torres Strait Islander people 2010. Australian Burden of Disease Study series no. 2. Catalogue no. BOD 2. Canberra: AIHW; 2015.
 Condon JR, Zhang X, Baade P, Griffiths K, Cunningham J, Roder DM, Coory M, Jelfs PL, Threlfall T. Cancer survival for Aboriginal and Torres Strait Islander Australians: a national study of survival rates and excess mortality. Popul Health Metr 2014; 12 1–11.
| Cancer survival for Aboriginal and Torres Strait Islander Australians: a national study of survival rates and excess mortality.CrossRef | 24479861PubMed |
 Cunningham J, Rumbold AR, Zhang X, Condon JR. Incidence, aetiology, and outcomes of cancer in Indigenous peoples in Australia. Lancet Oncol 2008; 9 585–95.
| Incidence, aetiology, and outcomes of cancer in Indigenous peoples in Australia.CrossRef | 18510990PubMed |
 Institute of Medicine. Crossing the quality chasm: a new health system for the twenty-first century. Washington, DC: National Academies Press; 2001.
 Australian Commission on Safety and Quality in Health Care (ACSQHC). Patient-centred care: improving quality and safety through partnerships with patients and consumers. Sydney: ACSQHC; 2011.
 Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013; 3 e001570
| A systematic review of evidence on the links between patient experience and clinical safety and effectiveness.CrossRef | 23293244PubMed |
 The Health Foundation. Measuring patient experience no. 18. Evidence scan. 2013. Available at: http://www.health.org.uk/sites/default/files/MeasuringPatientExperience.pdf [verified 20 October 2015].
 Quality Health NHS England. 2014 National cancer patient experience survey national report. Available at: https://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2014-national-cancer-patient-experience-survey/2014-national-cancer-patient-experience-survey-national-reports/688-2013-national-cancer-patient-experience-survey-national-report-pdf/file [verified 20 October 2015].
 Black C, Mooney D, Peterson S. Patient experiences with outpatient cancer care in British Columbia, 2012/13. 2014. Available at: http://www.health.gov.bc.ca/library/publications/year/2014/patient-experiences-outpatient-cancer-care.pdf [verified 20 October 2015].
 Hestad Iversen H, Holmboe O, Andresen Bjertnæs ØA. The Cancer Patient Experiences Questionnaire (CPEQ): reliability and construct validity following a national survey to assess hospital cancer care from the patient perspective. BMJ Open 2012; 2 e001437
 Davies E, Shaller D, Edgman-Levitan S, Safran DG, Oftedahl G, Sakowski J, Cleary PD. Evaluating the use of a modified CAHPS survey to support improvements in patient-centred care: lessons from a quality improvement collaborative. Health Expect 2008; 11 160–76.
| Evaluating the use of a modified CAHPS survey to support improvements in patient-centred care: lessons from a quality improvement collaborative.CrossRef | 18494960PubMed |
 Kleeberg UR, Feyer P, Gunther W, Behrens M. Patient satisfaction in outpatient cancer care: a prospective survey using The PASQOC questionnaire. Support Care Cancer 2008; 16 947–54.
| Patient satisfaction in outpatient cancer care: a prospective survey using The PASQOC questionnaire.CrossRef | 18204867PubMed |
 O’Brien I, Britton E, Sarfati D, Naylor W, Borman B, Ellison-Loschmann L, Simpson A, Tamblyn C, Atkinson C. The voice of experience: results from Cancer Control New Zealand’s first national cancer care survey. N Z Med J 2010; 123 10–19.
| 21317956PubMed |
 Victorian Comprehensive Cancer Centre. Living with cancer. 2013. Available at: https://www.victorianccc.org.au/our-work/living-with-cancer/ [verified 20 October 2015].
 Victorian Department of Health and Human Services. Victorian cancer patient experience survey tool project. Available at: https://www2.health.vic.gov.au/about/health-strategies/cancer-care/cancer-projects/victorian-cancer-patient-experience-survey-tool-project http://health.vic.gov.au/cancer/cancer-projects/survey_tool.htm [verified 27 May 2016].
 Cancer Institute NSW, University of Wollongong. Development of prioritised patient experience indicators for the Patient Centred Quality Cancer System Program. 2016. Available at: http://ahsri.uow.edu.au/chsd/projects/cancer-patient-experience/index.html and https://www.cancerinstitute.org.au/events/2015-innovations-in-cancer-treatment-and-care-conference/nsw-cancer-patient-experience-survey-pilot-project [verified 27 May 2016].
 Brown A, Roder D, Yerrell P, Cargo M, Reilly R, Banham D, Micklem J, Morey K, Stewart H, for the CanDAD Aboriginal Community Reference Group and other CanDAD Investigators Cancer Data and Aboriginal Disparities Project (CanDAD) – an overdue cancer control initiative. European J Cancer Care 2016; 25 208–13.
| 1:STN:280:DC%2BC28jltVCrsg%3D%3D&md5=766be5f092982bd2b25a973bd16c42cdCAS |
 Cancer Australia. Meeting the cancer challenge: the roles and goals of Cancer Australia. Cancer Australia’s goals; Improve cancer outcomes. 2015. Available at: http://canceraustralia.gov.au/about-us/news/meeting-cancer-challenge-roles-and-goals-cancer-australia [verified 20 October 2015].
 Picker Institute Europe. Towards a European strategy for patient centred research. 2015. Available at: http://www.Pickereurope.org/wp-content/uploads/2015/01/2014-15-01-TowardsAEuropeanStrategyPatientCentredResearch.pdf [verified 20 October 2015].
 Micklem JM. Self-reported health-related quality-of-life issues for Aboriginal and Torres Strait Islander patients with experience of cancer in Australia: a review of literature. Int J Evid-Based Healthc 2015; 13 233–53.
| 26126000PubMed |