To provide the latest evidence for future research and practice, this study critically reviewed Indigenous peoples’ cancer care experiences in the Australian healthcare system from the patient’s point of view. After searching PubMed, CINAHL and Scopus databases, twenty-three qualitative studies were included in this review. The inductive approach was used for analysing qualitative data on cancer care experience in primary, tertiary and transitional care between systems. Three main themes were found in healthcare services from Indigenous cancer care experiences: communication, cultural safety, and access to services. Communication was an important theme for all healthcare systems, including language and literacy, understanding of cancer care pathways and hospital environment, and lack of information. Cultural safety was related to trust in the system, privacy, and racism. Access to health services was the main concern in transitional care between healthcare systems. While some challenges will need long-term and collective efforts, such as institutional racism as a downstream effect of colonisation, cultural training for healthcare providers and increasing the volume of the Indigenous workforce, such as Indigenous Liaison Officers or Indigenous Care Coordinators, could effectively address this inequity issue for Indigenous people with cancer in Australia in a timely manner.

Purpose: To critically appraise the psychometric properties and cultural appropriateness of self‐reported generic patient-reported outcome measures (PROMs) applicable for use in the primary healthcare setting using the Consensus Based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines. Methods: PROMs were identified via a published systematic review and searches of relevant websites. PROMs were included if they were generic (i.e., outcome measures that assessed general aspects of health); had a maximum of 30 items; were applicable for use by all adult primary care patients; and were validated in English. Data was extracted regarding the characteristics of each PROM and the characteristics of included validation studies. The COSMIN risk of bias checklist was used to assess methodological quality and the revised COSMIN criteria was used to assess measurement properties. An evidence synthesis was conducted across studies using the guidelines from the modified Grading of Recommendations Assessment, Development and Evaluation approach for systematic reviews of clinical trials. Results: 399 PROMs were identified and 19 met inclusion criteria. The included PROMs measured general health related quality of life (n = 8), outcomes or impact of care (n = 3), patient enablement, activation, and empowerment (n = 3), quality of care (n = 3), health and disability (n = 1), and functional status (n = 1). Six PROMs met the recommended COSMIN threshold for implementation. Conclusion: Although six PROMs can be recommended for use in primary care, further psychometric testing is still required to strengthen evidence related to internal consistency, responsiveness and cross-cultural validity/measurement invariance. Selection of a PROM for routine clinical use in primary care also needs to be guided by the patient population.

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing.

AHR explores major national and international health issues and questions. Our readership includes managers, policy makers and clinical staff in health organisations including government departments, hospitals, community centres and aged-care facilities as well as all others with an interest in the health industry. It enables health professionals to keep their fingers on the pulse of the nation´s health decisions and to know what the most influencial commentators and decision makers are thinking. It also publishes new research from practitioners - managers and clinicians - and reports of breakthrough projects that demonstrate better ways of delivering care.

Background Indigenous communities worldwide lead calls for all evaluations of research, programmes and policies affecting their communities to reflect the values, priorities and perspectives of the Indigenous peoples and communities involved. Tools, such as the Quality Appraisal Tool (QAT), are available to assess research quality through an Indigenous cultural lens. Good evaluation requires that evaluation efforts be evaluated. We found that critical reflection on the quality of evaluations from an Indigenous perspective is largely absent from the published literature. To ensure that we strive for quality in evaluation as determined by Indigenous people with whom we work, we examined the quality of our own evaluation of an Indigenous health research collaboration by conducting a reflexive dialogue. Methods The QAT was used to assess our evaluation according to Indigenous health research principles. Our qualitative study used analytical coautoethnography to generate data through a series of reflexive dialogue sessions with Indigenous and non-Indigenous members of the research collaboration, using the QAT criteria as discussion prompts. Our ideas and reflections were compared and contrasted through a collaborative and iterative writing process, multiple review cycles and discussions. Results We documented our findings against the QAT framework. We found examples that each QAT principle had, to some extent, been adhered to, but constantly needed to assess whether the principles were fully achieved to our satisfaction. Strengths of the evaluation included being adaptable and responsive to emerging issues for the research collaboration, while areas for improvement included more Indigenous leadership of, and involvement in, evaluation. Conclusions Although reflexive evaluation practice is not always comfortable, it does provide an opportunity to generate insights for improvement. Reflecting as we did—in a partnership between Indigenous and non-Indigenous colleagues—enabled deeper insights and meaning. We anticipate that our process models how other research in Indigenous contexts might better advance ethical, quality Indigenous research through working in collaboration with Indigenous researchers and communities.

Empirical evidence and current policy documents strongly indicate a requirement for greater healthcare integration for Aboriginal and Torres Strait Islander people as an extension of the current coordinated care models. System fragmentation and the documented evidence of inadequate care transitions of many Aboriginal and Torres Strait Islander patients test the adequacy and flexibility of health systems to provide access and effective, efficient and appropriate care. Integration across organisations and sectors in the health system is necessary for coordinated patient-centred care that improves patient experiences and health outcomes and adds value to the system by delivering efficiencies. In this project, we aimed to better understand integrated care as a significant quality improvement approach in delivering care between the primary, secondary and tertiary care systems for Aboriginal and Torres Strait Islander people as the first step to real-world design and implementation. Firstly, we used a ‘participatory’ systematic review methodology to identify care processes and effective components needed to support integrated care models between primary, secondary and tertiary care. We focused on the processes involved in its implementation, delivery, and outcomes and impact to develop a conceptual model. Engagement with healthcare providers and community members grounded the theoretical model in real-world contexts. We then tested the model using a jury approach and wargaming, a soft simulation method. The structural reforms needed to ensure effective multistakeholder, multilevel integrated care implementation were identified and priority setting for implementation considered. We will present the developed integrated care model and discuss the inherent opportunities and challenges for implementation.