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11 Aug 2021

What's next in breast cancer research?

  • VCCC Alliance
  • BCNA
Consumer-driven workshop puts patients at the centre

Identifying the gaps in breast cancer research may provide the key to innovative approaches and new ways to improve the outcomes for patients affected by breast cancer.

During July, representatives from the VCCC Alliance and a multidisciplinary group of healthcare professionals and breast cancer advocates from the Breast Cancer Network Australia (BCNA) were brought together by the Breast Cancer R&E leads Professor Bruce Mann and Dr Belinda Yeo.

The online meeting was the first VCCC Alliance Consumer-Driven Research Workshop to explore research questions related to breast cancer.

Dr Yeo said, "It is important to involve our consumers from the beginning of the research process. This better ensures that our projects are relevant and impactful."

A case study in co-design

Earlier in the year, BCNA developed an online survey to obtain feedback from their consumer representatives about the research topics and questions that mattered to them and the areas they would like to see explored in coming years.

Comments were canvassed across a range of areas from the identification and management of people at increased risk of breast cancer, diagnosis of early breast cancer, follow-up care, survivorship and quality of life issues for people affected by breast cancer.

In late May 2021, an initial consultation meeting was held with VCCC Alliance members and BCNA as well as representatives from ANZ Breast Cancer Trials Group, the Australian Institute of Health Innovation (AIHI), faculty of Medicine and Health Sciences at Macquarie University and the Psychosocial Health and Wellbeing Research (emPoWeR) Unit based at the Department of Obstetrics and Gynaecology, University of Melbourne.

The result was a list of unanswered questions about cause, prevention, diagnosis, management, and the effects of treatments and their impact on lifestyle and career.

"Great outcomes are achieved with the right question," said Professor Bruce Mann.

"I think one of the hardest parts of doing good research is to identify a great question that can be answered with appropriate research. It's really hard to do and if you ask the wrong question, no matter how good your research is, you may not achieve the result that matters most to patients," said Professor Mann.

Dr Jasper De Boer, program manager for the Research and Education Lead, Breast Cancer program said, “This meeting was an important step in bringing our large and invested groups together. Patients have a perspective of their health and needs-based upon lived experiences that may vary from those in the medical profession.”

“They have important and insightful ideas about what research would be most beneficial to them.”

Deciding what to tackle

The results from Consumer-Driven Research Workshop identified four areas where a significant impact could be made.

Living well with and beyond breast cancer and follow-up care approaches

  • How could risk-stratified follow-up care best be delivered for those diagnosed and treated looking at solutions like personalised information and treatment summaries, tailored follow-up schedules
  • How can patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) be used to improve quality of life and potentially survival in people with early and metastatic breast cancer?
  • The impact and management of long-term side effects

Social and financial aspects of breast cancer and its treatment

  • Research exploring the direct costs of breast cancer treatment and care
  • Exploration of the long-term financial impact of breast cancer particularly in areas where women already experience disadvantage such as superannuation and lost wages
  • Research into the employment experiences of people affected by breast cancer

Breast cancer risk

  • Develop clear guidelines for testing and surveillance of people at increased risk
  • Study the value of screening women aged 40-49 for breast cancer and
    compare to other age groups
  • Research into best ways to communicate about early detection to First Nations people

Breast cancer management/optimal care

  • Research into discrepancies that exist in patterns of care and outcomes for people with breast cancer in Australia, e.g. between regional, rural and metropolitan areas, between states and territories, for First Nation Peoples, for people from culturally and linguistically diverse backgrounds
  • Why has the median survival of those with metastatic breast cancer remained largely unchanged for the past two decades despite the research into breast cancer causes and treatments?
  • What triggers disease progression after long periods of disease-free survival in people being treated for metastatic breast cancer?

"I just want to say thank you to Bruce and Belinda for involving us at this early stage. It is so essential to making sure that we're answering questions that are important to us."  Consumer representative

The workshop resulted in research priorities that will enable a co-designed research project, with the aim to translate actionable solutions that help to improve breast cancer care and survivorship.

For more information, contact Dr Jasper Boer, Research and Education Lead, Breast Cancer program.

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