Introduction

While breast cancer diagnoses in Australia are increasing, the mortality rate has declined following improvements in screening, diagnosis and treatment.1 The information needs for people with breast cancer are likely to increase as many are diagnosed at a younger age, have a range of treatments to choose from and have to navigate survivorship.2 In 2019, Breast Cancer Network Australia launched the My Journey online tool to provide tailored information to people with breast cancer.3 The tool uses demographic, diagnostic and treatment data, to tailor the information given to the user, which is updated and amended as they progress through their care pathway.4 5 My Journey can be accessed on smartphones, tablets and computers,6 and people with breast cancer have reported that it has helped them better prepare for appointments and treatment, manage side effects, access specialist information, explore other people’s experiences and share their care pathway with friends and family.7

Challenge

In 2020, an estimated 20,000 people in Australia will be diagnosed with breast cancer.1 While the number of people with breast cancer is growing, mortality has declined following improvements in diagnosis and advances in treatment. In fact, the five-year survival rate for breast cancer is now 90%, and the 10-year survival rate is 85%.1

The information needs of people with breast cancer are likely to increase. Many people are now diagnosed at a younger age, have more treatment options to choose from and will have to navigate post-treatment care and survivorship.2 People with cancer report that it can be difficult to retain medical information provided in a consultation, especially when they are first diagnosed.7 They may also find it overwhelming to receive large amounts of general information, which may not all be directly relevant to their diagnosis, cancer stage and personal care pathway.3

Solution

In 2019, Breast Cancer Network Australia (BCNA) launched the My Journey online tool to provide tailored information to people with breast cancer.3 The tool includes evidence-based information and insights from people with cancer, which are regularly reviewed and updated by experts.5 6 When registering for the tool, people are asked to provide demographic, diagnostic and treatment information.4 Based on these data, My Journey tailors the information presented to the user, which is updated and amended as they progress through their care pathway.5

The tool covers all stages of breast cancer and includes a wide range of topics, such as:

  • emotional wellbeing and survivorship
  • relationships
  • fertility
  • communication with healthcare professionals
  • health system factors (e.g. clinical guidelines, public versus private healthcare)
  • treatments and side effects
  • clinical trials
  • returning to work and financial matters
  • nutrition and exercise
  • family history and genetics
  • palliative care.8

My Journey offers updates on breast cancer research,6 as well as videos, podcasts and webcasts that can be bookmarked and shared with friends and family.5 It is free of charge and can be accessed on smartphones, tablets and computers.6

What has been achieved

People with breast cancer report that My Journey has helped them:

  • prepare for appointments and treatment
  • manage side effects
  • access specialist information, even from rural or remote settings
  • explore other people’s experiences of breast cancer and feel less alone
  • share their care pathway with their friends and family.7

My Journey also incorporated a COVID-19 section to ensure users could access up-to-date information on the virus and the potential impact of the pandemic on their care.8

Next steps

BCNA is hoping to develop a My Journey mobile application.4

Further information

References:

  1. Breast Cancer Network Australia. 2020. Breast cancer statistics in Australia Available here: https://www.bcna.org.au/media/7708/bcna-stats_infographic-2020.pdf [accessed: October 2020]
  2. Barr K, Hill D, Farrelly A, et al. 2020. Unmet information needs predict anxiety in early survivorship in young women with breast cancer. J Cancer Surviv 14(6): 826-33
  3. Breast Cancer Network Australia. 2019. New digital tool makes breast cancer journey less overwhelming for Australian women Available here: https://www.medianet.com.au/releases/173304/
  4. Breast Cancer Network Australia. My Journey: frequently asked questions Available here: https://myjourney.org.au/faqs
  5. Breast Cancer Network Australia. My Journey: find up-to-date, reliable information tailored to your changing needs during your breast cancer experience Available here: https://myjourney.org.au/
  6. Breast Cancer Network Australia. My Journey online tool Available here: https://www.bcna.org.au/understanding-breast-cancer/resources/my-journey-online-tool/
  7. Breast Cancer Network Australia. 2019. Breast Cancer Network Australia's My Journey online tool. Available here: https://www.youtube.com/watch?v=TnjTSxGSl6o
  8. Breast Cancer Network Australia. My Journey: what topic are you interested in today? (user content) Available here: https://myjourney.org.au/topics