Models of care

Evidence summary and stakeholder input

The following is a summary of the findings from the evidence gathering activities and stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page.

Last updated: 31 March 2022

Evidence summary

The pancreatic cancer Optimal Care Pathway (OCP) describes the standard of care that should be available to all patients with pancreatic cancer treated in Australia. The pathway supports patients and carers, health systems, health professionals and services, and encourages consistent optimal treatment and supportive care at each stage of a patient’s journey.¹

The Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer² was developed with the aim of reducing disparities and improving outcomes and experiences for Aboriginal and Torres Strait Islander people with cancer. This OCP is relevant to all cancers and complements the pancreatic cancer OCP. 

The pancreatic cancer OCP was the only identified model of care for people with pancreatic cancer and their carers. There are no specific models of care for the various stages of a person’s pancreatic care journey and only limited levels of evidence for various elements of care within each stage. 

Having surgery in a high-volume pancreatic surgical centre undertaken by a trained surgeon who performs a minimum number of procedures has been associated with better short and long-term outcomes.³𝄒⁴

There is low to moderate evidence that regional cancer networks improve pancreatic cancer outcomes. However, international studies have demonstrated that the integration of telehealth with specialist pancreatic care enhanced access and led to better integration of family and carers into pancreatic cancer clinical decision-making.⁵

Opportunities exist to test hybrid models of pancreatic care that include reciprocal arrangements between low-volume centres in regional areas and high-volume centres in metropolitan areas, to extend telehealth as part of highly sub-specialised care to ensure the timely follow-up, assessment and provision of information to patients, and to improve the patient experience by developing optimal models of care coordination, information and support. 

The development and testing of new models of care are required to deliver the care experience in an appropriate, responsive and coordinated manner and drive improved quality of life and survival outcomes. The models of care should meet the needs of priority population groups and strengthen access to, and integrate provision of, culturally safe care for patients, their families and carers. 

Stakeholder input

The following is a summary of the findings from the stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page. 

Models of care

Stakeholders noted that the best pancreatic cancer outcomes occur when an experienced team is involved in treatment and management, and treatment is usually undertaken at specialist services located in metropolitan areas.

Stakeholders highlighted issues of access to best-practice treatment and care, equity of outcomes of a range of population and patient groups, challenges in access to specialist treatment and care for rural patients, precedents in other cancer types to establish networked models of centres of excellence, and the importance of agile multidisciplinary models of culturally competent care.

Stakeholders also supported the development of new models of care and service delivery, including telehealth, virtual support services, and innovative models for delivery of supportive and palliative care.

The need to define essential and desirable components of excellent pancreatic cancer care with a view to ensuring complex care is delivered safely in services with appropriate resources and expertise, while facilitating delivery of less complex components of treatment and care closer to home where it is safe to do so was also highlighted.

Stakeholders identified that models of care must be effective in public and private settings and be accessible regardless of location or sociodemographic of the population serviced. Greater collaboration between local Indigenous organisations and cancer care services to develop new models of culturally safe care, and provision of culturally appropriate support services were highlighted. The use of funding models and rebates to support and incentivise the delivery of optimal models of care was identified.

Culture influences beliefs, values and practices in relation to health and cancer care. CALD consumers were not seen as involved in decision-making to the level that is expected for both person-centred models of care and social models of service delivery. Stakeholders identified that CALD consumers should be offered patient-centred care models and be able to participate in discussions about their care. The need for a cultural framework to provide culturally appropriate and person-centred care was raised and establishing an optimal care pathway for CALD people was highlighted.

The role of informal carers is enhanced in situations involving CALD consumers and their families and there is a strong perception that this role is neither identified nor supported. Collective decision-making often forms part of how families from CALD backgrounds deal with important decisions and support is often provided by community structures including religious organisations and other individuals. In addition, given the generally late diagnosis and rapid progression of pancreatic cancer, and potential linguistic and cultural issues faced by CALD consumers, there is a greater likelihood that substitute decision-makers need to be identified for CALD patients.

Capacity building for substitute decision-makers to support their role and offering a more community-oriented model of care, in which decision-making is facilitated for the CALD patient and their family, were seen as assisting to deliver more culturally relevant care and acceptable decision-making.

People, health, and connection to land, community and identity are intrinsically linked for Aboriginal and Torres Strait Islander people.51 The impact of pancreatic cancer and its treatment is greatly compounded for Aboriginal and Torres Strait Islander people as it dramatically ruptures connections between people, health, land, community and identity.

The importance of access to good quality care that is culturally, as well as medically, appropriate across the continuum of care was highlighted by Aboriginal and Torres Strait Islander stakeholders, together with the importance of patients and their families being informed of the treatment options and prognosis, so that they are empowered to make informed choices.

Workforce

A suitably trained and capable workforce is required to support new or enhanced delivery of high-quality models of culturally safe cancer care. Workforce considerations include the need for recruitment and retention of health professionals in rural areas, consideration of innovative models of outreach care, optimising cancer workforce capability across the care continuum, and the development of health professional cultural competence.

Low levels of cultural competence among health professionals were raised by stakeholders along with the need for a cultural framework to increase cultural responsiveness through training and human resources. Stakeholders raised the importance of culturally appropriate communication skills for health professionals. The education of the cancer care workforce in cultural communication skills was seen as an enabler to strengthen access to, and integrate provision of, culturally safe cancer care.

The ability to practice with a cultural lens was also seen to facilitate positive impacts on a CALD consumer’s cancer journey and involving bicultural health professionals provides a conduit to achieving high levels of understanding, treatment compliance and advance care planning.

The role of bilingual/ bicultural health workers to provide linguistic skills as well as a cultural lens and insights, was seen to be invaluable in the care of CALD people. However, the availability of interpreters, interpreter experience in health settings, additional time and complexity of interpreted communications, and concerns over confidentiality were raised as barriers to providing culturally competent care.

Investing in the Aboriginal health workforce to ensure the provision of culturally safe and responsive care was also identified as a priority. Specifically, strengthening and expanding the Aboriginal and Torres Strait Islander workforce in cancer services, ACCHOs and other primary health care settings, and increasing the number of Aboriginal liaison officers, and patient navigators in communities or hospitals were identified.

Key priority areas, strategies and activities 

Each key priority area has supporting strategies and associated activities for implementation in the short, medium or long term that have been identified to achieve the priority.