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."
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.”
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
Social and financial aspects of breast cancer and its treatment
Breast cancer risk
Breast cancer management/optimal care
"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.