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Navigation in Cancer Care Summary
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Policy priorities

Policy priorities

Navigation in Cancer Care

Vision

All Australians can access safe and appropriate cancer information and navigation support to improve their experience of cancer care.

Priority: Fund the development and implementation of an Australian Cancer Information Strategy

Impact

The provision of evidence-based, up-to-date, and trusted information is essential for people affected by cancer to be active participants in their care, empowering people to make informed decisions and self-advocate. Cancer information should be widely available and accessible to people when they need it, as information needs may be situation-dependent and change over time. Currently, cancer information comes from many sources, including government and health services, research institutions, and not-for-profit cancer organisations. Cancer information is variable in terms of consistency in quality, reliability, and accessibility, some with limited consideration of different community population needs, especially those with low levels of health literacy. An Australian Cancer Information Strategy could be used as a framework to inform the development of high-quality cancer information that addresses the needs and preferences of different priority populations. To support the implementation of this strategy, funding will be required to support organisations in developing and distributing cancer information to ensure sustainability and sufficient resourcing to maintain the accessibility and relevance of cancer information, given the rapidly evolving nature of cancer diagnostics and care.

Evidence

People and their cancer experiences are diverse, resulting in a broad spectrum of information needs, requiring information to be delivered through a range of modalities and across the cancer continuum.1-11 Treatment and care options may be better understood when tailored information is timely, leaving people feeling empowered in their discussions with their healthcare providers.5, 10 The information provided should be specific to their cancer type and stage, as well as to the specific personal experience of individuals, including their demographic and cultural background, and clinical history.1, 4 People affected by cancer require information at every point of the cancer continuum, from diagnosis through to survivorship and in the end-of-life stage, although they feel that they lack pathways to access information from their treatment team.10 Currently people commonly report that information is provided after an unmet need has been identified, although information should be provided earlier to avoid times of crisis.4 People in distress who accessed a telephone-based information and support service were most likely to be offered information materials.12 For the provision of information, people affected by cancer prefer a referral for information to come from their diagnosing clinician or other trusted healthcare provider and have varied preferences for the information to be printed or web-based.2, 5, 7, 11, 13

Priority: Ensure all Australians are connected to the appropriate level of navigation support regardless of their entry point to cancer care services.

Impact

The ACNNP aims to ensure all people with cancer have access to navigation support that ensures timely access to healthcare and support services, irrespective of their circumstances Achieving this aim requires navigation support that is accessible and appropriate to all stages of the cancer experience and facilitates integration and connectivity of services across the healthcare system and sector providing multiple opportunities for support. People may access the healthcare system for cancer care through different entry points, including accessing cancer type-specific, state-specific support services, and community-representative organisations. Regardless of their entry point or support needs, which may change over time, all Australians should have access to an appropriate level of navigation support through the ACNNP. Ensuring the 10-year strategic objectives of the ACP are being met will require ongoing assessment of the implementation of the ACNNP to support these goals. Once the program has demonstrated its feasibility, additional funding will be required to ensure the long-term sustainability and expansion of the program. In addition, promotion of the ACNNP and partnerships with healthcare professionals working with people affected by cancer, cancer care and community-representative organisations, are key to ensuring any person who requires cancer navigation support has access irrelevant of their entry point into cancer care services.

Evidence

Variation in access to navigation services

Navigation support and help accessing healthcare services is needed regardless of the type or stage of cancer.14 Difficulties accessing healthcare services for someone with cancer can start from diagnosis and may continue throughout the cancer experience.15 In a study of people with pancreatic cancer, navigation and, more broadly, care-coordination was found to significantly improve peoples’ experiences, including increasing quality of life and decreasing depression and anxiety, and those with appropriate navigation experienced fewer disease specific symptoms such as nausea, pain and sleep disruptions.16 Access to a navigation service streamlines care when compared to not having access to this sort of service.17 Despite the improved outcomes associated with cancer navigation, there are persistent inequities in the provision of navigation services, particularly by cancer type, geographical location and in the public versus the private system.18, 19

Access to a specialist nurse navigator is dependent on where someone is treated, with a quarter of hospitals treating people with head and neck cancer lacking a cancer navigator role.20 As an example, in an evaluation of a Youth Cancer Service, it was found that 10% of the referrals to the program came from a private treatment centre, even though about 35% of adolescents and young adults with cancer are treated in the private healthcare system, highlighting a potential gap for younger people with cancer and those in the private healthcare system.21 In a sample of healthcare professionals, all recognised the benefits of the navigator, and when there was a navigator made available within their hospital, nearly all the sampled healthcare professionals reported being likely to refer people with cancer to the service.20

People who live at distance away from treatment

Guiding people through the complexities of cancer treatment was seen as especially important for those residing outside metropolitan areas, as they commonly receive care in multiple treatment centres far from home.22 A study of people diagnosed with cancer in rural Queensland recommended that models of service delivery, including the provision of information and navigation, need to be tailored to the strengths of those who reside in rural and remote locations, reducing the barriers to accessing healthcare and increasing equity across geographical locations.23 This complements recommendations for streamlined referral processes and training and education for healthcare providers in rural areas.15 To improve access in these areas it was stated that a telephone-based service could address some of the issues by providing support remotely.21

Priority: Fund community-based organisations to support the development and delivery of safe and appropriate cancer navigation support.

Impact

To ensure the sustainability of community-based organisations that represent the interests and experiences of priority populations, there is a need for funding to enable their role in the design and development of cancer navigation support services, programs and resources that meet the specific needs of the community they represent. In recognition of the poor cancer outcomes and experiences of priority populations, cancer information and navigation support must be co-designed to address peoples’ unmet informational, and navigation needs to enable active engagement in their care. A healthcare system without discrimination or racism, one where navigation support is safe and appropriate for every Australian, would enable access to optimal cancer care.

Evidence

Determinants of navigation and information needs include culture and language, location of residence, sexuality and gender, disability and mental ill health, socioeconomic status and age.24 The determinants may intersect, meaning that it is imperative that people can access appropriate information and, where necessary, navigation services to ensure that they can access timely healthcare despite the complexities of a cancer diagnosis.25 Common barriers to optimal care for people with cultural needs include an inflexible health system, inadequate cultural competency in the delivery of care from healthcare professionals, and systemic racism and exclusion.26-31

People who are not confident speaking or reading English may have additional needs when accessing cancer care in Australia. To provide person-centred care, healthcare professionals must support the people they care for and their carers to determine their specific needs to ensure comfort and safety in their provision of care.32 Preferably people should be able to access information about their diagnosis, treatment and survivorship experience in language that is easy for them to understand.33 The use of professional interpretation services for people who speak a language other than English more proficiently may improve the person’s ability to navigate the complexities of a cancer diagnosis and access care.32 Unfortunately, access to these services depends on availability, funding, and a request by a healthcare professional.34


Definitions

Navigation in Cancer Care

Consistent, individualised and safe assistance is offered to people affected by cancer, families, and carers to overcome person and system-level barriers to timely access to health, support and psychosocial care throughout the cancer experience.1

Cancer Care Coordination

The deliberate organisation between two or more participants (including the person with cancer) involved in care to facilitate the appropriate and timely delivery of healthcare and support services.2 Care coordination is a comprehensive process that operates at a clinical, organisational, administrative and policy level.

Person-Centred Care

Integrated healthcare services and support that are delivered in a setting and manner that is responsive to individuals and their goals, values, and preferences.

Priority Populations

Priority population groups, as defined in the Australian Cancer Plan (ACP), include Aboriginal and Torres Strait Islander Peoples, people living in rural and remote areas, lesbian, gay, bisexual, transgender, intersex, queer and asexual (LGBTIQA+) people, people from culturally and linguistically diverse backgrounds, people living with disability, people in lower socioeconomic groups, people living with a mental illness, older Australians, adolescents and young adults, and children.

1. Kline RM, Rocque GB, Rohan EA, et al. Patient Navigation in Cancer: The Business Case to Support Clinical Needs. Journal of Oncology Practice 2019; 15: 585-590. DOI: 10.1200/jop.19.00230.

2. McDonald K M, Sundaram V, Bravata D M, et al. Care Coordination. In: Shojania KG, McDonald K M, Wachter R M, et al. (eds) Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies. Rockville (US): Agency for Healthcare Research and Quality, 2007.

References

  1. Lim BT, Huang Y-J, Shepherd HL, et al. Health literacy and cancer care coordination in Chinese migrant patients and their carers: A cross-sectional survey. Psycho-oncology 2019; 28: 1048-1055. DOI: https://dx.doi.org/10.1002/pon.5050.
  2. Sinclair M, Schofield P, Turner J, et al. Maternal breast cancer and communicating with children: A qualitative exploration of what resources mothers want and what health professionals provide. European journal of cancer care 2019; 28: e13153. DOI: https://dx.doi.org/10.1111/ecc.13153.
  3. Jelicic L, Brooker J, Shand L, et al. Experiences and health care preferences of women with ovarian cancer during the diagnosis phase. Psycho-oncology 2019; 28: 379-385. DOI: https://dx.doi.org/10.1002/pon.4952.
  4. Hyatt A, Shelly A, Cox R, et al. How can we improve information for people affected by cancer? A national survey exploring gaps in current information provision, and challenges with accessing cancer information online. Patient Educ Couns 2022; 105: 2763-2770. 20220415. DOI: 10.1016/j.pec.2022.04.009.
  5. Williams N, Griffin G, Farrell V, et al. Gaining insight into the supportive care needs of women experiencing gynaecological cancer: A qualitative study. Journal of Clinical Nursing 2020; 29: 1684-1694. DOI: 10.1111/jocn.15221.
  6. Flight IH, Chapman J, Harrison NJ, et al. Mapping Information Needs over the Diagnosis, Treatment, and Survivorship Trajectory for Esophago-gastric Cancer Patients and Their Main Supporters: a Retrospective Survey. Journal of cancer education : the official journal of the American Association for Cancer Education 2022; 37: 655-661. DOI: https://dx.doi.org/10.1007/s13187-020-01862-7.
  7. Lee K, Hoti K, Hughes JD, et al. Consumer Use of “Dr Google”: A Survey on Health Information-Seeking Behaviors and Navigational Needs. Journal of Medical Internet Research 2015; 17: e288. DOI: 10.2196/jmir.4345.
  8. Livingston PM, Heckel L, Orellana L, et al. Outcomes of a randomized controlled trial assessing a smartphone Application to reduce unmet needs among people diagnosed with CancEr (ACE). Cancer medicine 2020; 9: 507-516. DOI: https://dx.doi.org/10.1002/cam4.2718.
  9. Zomerdijk N, Jongenelis M, Yuen E, et al. Experiences and needs of people with haematological cancers during the COVID-19 pandemic: A qualitative study. Psycho-oncology 2022; 31: 416-424. DOI: https://dx.doi.org/10.1002/pon.5819.
  10. O'Neill CJ, Carlson MA, Rowe CW, et al. Hearing the Voices of Australian Thyroid Cancer Survivors: Qualitative Thematic Analysis of Semistructured Interviews Identifies Unmet Support Needs. Thyroid : official journal of the American Thyroid Association 2023. DOI: https://dx.doi.org/10.1089/thy.2023.0080.
  11. Todio E, Schofield P and Sharp J. A Qualitative Study of Men's Experiences Using Navigate: A Localized Prostate Cancer Treatment Decision Aid. MDM policy & practice 2023; 8: 23814683231198003. DOI: https://dx.doi.org/10.1177/23814683231198003.
  12. Taylor J, Fradgley EA, Clinton-McHarg T, et al. Referral and uptake of services by distressed callers to the Cancer Council Information and Support telephone service. Asia-Pacific journal of clinical oncology 2022; 18: 303-310. DOI: https://dx.doi.org/10.1111/ajco.13604.
  13. Paul CL, Carey ML, Hall AE, et al. Improving Access to Information and Support for Patients With Less Common Cancers: Hematologic Cancer Patients’ Views About Web-Based Approaches. Journal of Medical Internet Research 2011; 13: e112. DOI: 10.2196/jmir.1894.
  14. Newton J, O'Connor M, Saunders C, et al. 'Who can I ring? Where can I go?' Living with advanced cancer whilst navigating the health system: a qualitative study. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2022.
  15. Foley J, Nund RL, Ward EC, et al. Clinician and consumer perceptions of head and neck cancer services in rural areas: Implications for speech pathology service delivery. The Australian journal of rural health 2022; 30: 175-187. DOI: https://dx.doi.org/10.1111/ajr.12829.
  16. Beesley VL, Janda M, Burmeister EA, et al. Association between pancreatic cancer patients' perception of their care coordination and patient-reported and survival outcomes. Palliative & supportive care 2018; 16: 534-543. DOI: https://dx.doi.org/10.1017/S1478951517000608.
  17. Drury VB and Inma C. Exploring patient experiences of cancer services in regional Australia. Cancer nursing 2010; 33: E25-31. DOI: https://dx.doi.org/10.1097/NCC.0b013e3181af5675.
  18. Ko NY, Darnell JS, Calhoun E, et al. Can Patient Navigation Improve Receipt of Recommended Breast Cancer Care? Evidence From the National Patient Navigation Research Program. Journal of Clinical Oncology 2014; 32: 2758-2764. DOI: 10.1200/jco.2013.53.6037.
  19. Valaitis R, Carter N, Lam A, et al. Implementation and maintenance of patient navigation programs linking primary care with community-based health and social services: a scoping literature review. BMC health services research 2017; 17: 116.
  20. Halkett GKB, Berg MN, Daudu D, et al. Supportive care of patients diagnosed with high grade glioma and their carers in Australia. Journal of neuro-oncology 2022; 157: 475-485. DOI: https://dx.doi.org/10.1007/s11060-022-03991-z.
  21. Bradford N, Henney R, Walker R, et al. Queensland Youth Cancer Service: A Partnership Model to Facilitate Access to Quality Care for Young People Diagnosed with Cancer. Journal of adolescent and young adult oncology 2018; 7: 339-348.
  22. Walsh J, Young JM, Harrison JD, et al. What is important in cancer care coordination? A qualitative investigation. European journal of cancer care 2011; 20: 220-227. DOI: https://dx.doi.org/10.1111/j.1365-2354.2010.01187.x.
  23. Baldwin AE and Usher K. Going the distance--experiences of women with gynaecological cancer residing in rural remote north Queensland. International journal of nursing practice 2008; 14: 322-328. DOI: https://dx.doi.org/10.1111/j.1440-172X.2008.00705.x.
  24. Cancer Australia. Australian Cancer Plan. 2023. Sydney (AU).
  25. Cantril C and Haylock P. Patient navigation in the oncology care setting. Seminars in oncology nursing 2013; 29: 76-90.
  26. Ivers R, Dickson M, Taylor K, et al. Barriers and facilitators to adherence to Optimal Care Pathways for diagnosis and treatment of cancer for Aboriginal and Torres Strait Islander people. Australian journal of primary health 2023. DOI: https://dx.doi.org/10.1071/PY22181.
  27. Cavanagh BM, Wakefield CE, McLoone JK, et al. Cancer survivorship services for indigenous peoples: where we stand, where to improve? A systematic review. Journal of Cancer Survivorship 2016; 10: 330-341. DOI: 10.1007/s11764-015-0479-2.
  28. Meiklejohn JA, Garvey G, Bailie R, et al. Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2017; 25: 1597-1605. DOI: https://dx.doi.org/10.1007/s00520-016-3563-x.
  29. Thackrah RD, Papertalk LP, Taylor K, et al. Perspectives of Aboriginal People Affected by Cancer on the Need for an Aboriginal Navigator in Cancer Treatment and Support: A Qualitative Study. Healthcare 2023; 11: 114. DOI: https://doi.org/10.3390/healthcare11010114.
  30. Shahid S, Finn L, Bessarab D, et al. 'Nowhere to room ... nobody told them': logistical and cultural impediments to Aboriginal peoples' participation in cancer treatment. Australian health review : a publication of the Australian Hospital Association 2011; 35: 235-241. DOI: https://dx.doi.org/10.1071/AH09835.
  31. Green M, Anderson K, Griffiths K, et al. Understanding Indigenous Australians’ experiences of cancer care: stakeholders’ views on what to measure and how to measure it. BMC Health Services Research 2018; 18. DOI: 10.1186/s12913-018-3780-8.
  32. Green A, Jerzmanowska N, Green M, et al. 'Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds. Palliative medicine 2018; 32: 1419-1427. DOI: https://dx.doi.org/10.1177/0269216318776850.
  33. O'Callaghan C, Schofield P, Butow P, et al. 'I might not have cancer if you didn't mention it': a qualitative study on information needed by culturally diverse cancer survivors. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2016; 24: 409-418. DOI: https://dx.doi.org/10.1007/s00520-015-2811-9.
  34. Shaw JM, Shepherd HL, Durcinoska I, et al. It's all good on the surface: care coordination experiences of migrant cancer patients in Australia. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2016; 24: 2403-2410. DOI: https://dx.doi.org/10.1007/s00520-015-3043-8.

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