People affected by cancer are partners in culturally safe, equitable and responsive cancer care, and health services and systems are trusted and supported for optimal experience, quality of life and cancer outcomes.
A person-centred focus to cancer care, underpinned by the Optimal Care Pathways (OCPs),[9] improves the experience of people affected by cancer, their families and carers. Health professionals also experience greater satisfaction, together with safety improvement and the cost-effectiveness of care.[120][121]
Enhancing an individual’s experience through their cancer journey relies on two key perspectives:
Priority areas for action in the Australian Cancer Plan (the Plan) to enhance consumer experience through person-centred cancer care include:
People affected by cancer are partners in culturally safe, equitable and responsive cancer care, and health services and systems are trusted and supported for optimal experience, quality of life and cancer outcomes.
In achieving this ambition, enhanced consumer experience for all Australians affected by cancer, especially those with poorer outcomes, will be central to the health system.
The ambition acknowledges that people with cancer are partners in their care. People affected by cancer need to be actively listened to and involved, to improve strengths-based care, build trust, and tailor cancer care systems of the future.
The development of a partnership between people affected by cancer—individuals, families, loved ones, carers—and care providers, supported by a trusted health system, is key to achieving this 10-year ambition.
Through this ambition, individuals will be involved in and co-design systems that enable:
Person-centred models of integrated navigation in cancer care are nationally defined, co-designed, developed and tested with consumers, to incorporate culturally safe cancer care.
In achieving this 2-year goal, person-centred navigation models of care that enhance consumer experiences will be co-designed, tested and accessible to all Australians.
These models of navigating cancer care will be nationally co-designed and tested with people affected by cancer, including Aboriginal and Torres Strait Islander people and other priority population groups.
Person-centred models of integrated navigation in cancer care are nationally defined, co-designed, developed and tested with consumers, to incorporate culturally safe cancer care.
In achieving this 2-year goal, person-centred navigation models of care that enhance consumer experiences will be co-designed, tested and accessible to all Australians.
These models of navigating cancer care will be nationally co-designed and tested with people affected by cancer, including Aboriginal and Torres Strait Islander people and other priority population groups.
Personalised models of navigation in cancer care are widely available to all Australians affected by cancer — engaging consumers in culturally safe, equitable and responsive cancer care, and driving re-orientation of health service systems, including training and distribution of cancer health workforce.
In achieving this 5-year goal, Australians will have equitable access to navigation models of cancer care that are personalised to accommodate their cultural and social needs, supported by a responsive health system. This goal is particularly important to reduce the variability in access to and provision of optimal cancer care for Aboriginal and Torres Strait Islander people and other priority population groups.
It is important that community support services, the cancer workforce and health systems provide an equitable, enhanced experience for people affected by cancer. Over the next five years, this will be achieved through:
Stakeholders identified areas of limited access to culturally safe and responsive cancer care and services. Access to supportive care is lacking, as is practical information and support. Stakeholders observed that navigating the health system can be complex, with individuals often needing more information and support than is provided.
Stigma due to a person’s culture or circumstance was identified as a barrier to accessing safe, responsive health care, with people not feeling heard or understood when describing symptoms and support needed. These barriers were greater for priority population groups due to additional needs, including age-appropriate care, cultural, social, and practical support, easily understood information and communication, and timely, accessible care and delivery. Addressing these barriers, through services tailored to respond to the unique needs of priority populations, is considered integral to optimising consumer experiences and equitable cancer outcomes.
Stakeholders observed that increasing equitable access to culturally safe cancer care was crucial to addressing institutional racism and discrimination within Australia’s health system. Greater availability of trusted, culturally safe services is regarded as central to improving quality of life and cancer outcomes.
Improving community knowledge about cancer, prevention, treatments, and survivability would contribute to improved outcomes. Benefits emphasised included community-based action, engagement, and empowerment to build understanding for Aboriginal and Torres Strait Islander people affected by cancer, along with their families, carers, and community.
Remoteness and affordability were raised as factors significantly impacting the ability of Aboriginal and Torres Strait Islander people to readily access cancer care.
Stakeholders observed that increasing equitable access to culturally safe cancer care was crucial to addressing institutional racism and discrimination within Australia’s health system. Greater availability of trusted, culturally safe services is regarded as central to improving quality of life and cancer outcomes.
Improving community knowledge about cancer, prevention, treatments, and survivability would contribute to improved outcomes. Benefits emphasised included community-based action, engagement, and empowerment to build understanding for Aboriginal and Torres Strait Islander people affected by cancer, along with their families, carers, and community.
Remoteness and affordability were raised as factors significantly impacting the ability of Aboriginal and Torres Strait Islander people to readily access cancer care.
Stakeholders indicated that people living in rural and remote areas have less choice and access to healthcare, including supportive care. Most services are concentrated in metropolitan areas that require extensive travel and dislocation from family, and there is limited access to multidisciplinary health professionals.
Limited access to clinical trials and comprehensive health care impact opportunities for optimal experiences and outcomes for people living in rural and remote areas. Relatively scarce resources in rural and remote areas limit access to specialist expertise for complex cancer care and reduce opportunities for equitable cancer outcomes.
Stakeholders highlighted that LGBTIQA+ people have multiple identities that require unique healthcare navigation needs which are not currently addressed within the health system.
The LGBTIQA+ community experiences discomfort due to stigma and discrimination when accessing health care services. LGBTIQA+ people present late to health services and experience delays in diagnosis in response to these barriers.
Culturally appropriate care and services that reflect LGBTIQA+ peoples’ needs and preferences in a health system designed to respect and understand people’s unique circumstance will improve experiences and equitable outcomes. Healthcare professionals should be equipped to understand and support issues related to gender identity and sex, including use of preferred pronouns.
Stakeholders noted that people from diverse backgrounds experience difficulties in accessing culturally responsive supportive care and information. Language barriers impact on communication with health providers, making it difficult for individuals to understand and adhere to treatments.
The importance of culture, spiritual needs and family in health care decisions was often misunderstood or dismissed. Limited availability of tailored information, and insufficient understanding of health services were also raised as factors impacting on optimal cancer care experiences and outcomes.
Stakeholders noted the need for effective communication between healthcare providers and people living with disability when giving complex information relevant to their cancer care. Opportunities exist to strengthen communication through audiovisual support tools and ensuring the presence of a carer or support worker.
Stakeholders identified the importance of empowering people living with disability to be partners in their care by involving them in conversations and enabling them to make informed decisions about their cancer care needs.
Disability support workers perform an enabling role in improving experiences with, and navigating access to, cancer care services for people living with disability.
Stakeholders viewed the costs of receiving cancer care to be a burden, including out-of-pocket payments for clinical services and costs associated with accessing treatment, including travel, accommodation, parking, and time away from work. These costs are not experienced equally by consumers. People in lower socioeconomic groups were seen to experience greater financial burden, reduced access to health care, and less practical support, creating increased hardship.
Stakeholders raised the important role of family carers in supporting mental health consumers to engage with healthcare service providers. This should be acknowledged and better integrated into cancer care.
Stakeholders emphasised that older people frequently experience ageism and stigma that impact on their treatment options, with limited access to supportive, palliative, and end-of-life care. Stakeholders underlined the importance of including the older person in their own care, as well as carer involvement in health decisions. Training for health professionals and carers to better recognise and support the needs of older people was viewed as important, along with more tailored information, communication, and support for older Australians with cancer.
Stakeholders observed that adolescents and young adults have distinct challenges associated with a cancer diagnosis, including missing out on school and important social milestones. Limited access to clinical trials for adolescents and young adults, including personalised medicine, is considered to contribute to poorer outcomes.
Inequity exists in survival outcomes for different cancer types, with particular challenges for young people diagnosed with rarer cancers with lower survival rates. Access to multidisciplinary survivorship care was viewed as needed to help young people adapt to cancer recovery.
Stakeholders indicated that children and their families are uniquely impacted by a cancer diagnosis, particularly in terms of participation in educational and social activities, disruption to social networks, and limited support for families, including in areas of psychosocial support, palliative care, and bereavement.
Community organisations were identified as a trusted source for children and families to access the care they need where they need it, including when they return home.
Co-designed, tailored health care that enables children and their families to navigate complex health and cancer care, supported by communities, is important to improve experiences and equitable outcomes for children and families affected by cancer.