From Warrnambool to Wagga Wagga, from Karratha to Cairns – Breast Cancer Network Australia (BCNA) has held information forums in regional and rural communities across Australia for people affected by breast cancer since 2022.
These forums have brought evidence-based, tailored information about breast cancer treatment, care and support direct to local communities.
They have also been a place where locals have met others in their community who have breast cancer. And others have discovered services in their own communities they didn’t know existed.
We know there are disparities in outcomes for those with breast cancer who live outside of metro areas. This is why the Australian Department of Health funds BCNA to travel and deliver information in-place in regional and rural communities.
In the 2023 financial year, BCNA delivered forums to over 450 people in seven regional and rural communities - Wagga Wagga (NSW), Rockhampton (QLD), Warrnambool (VIC), Port Lincoln (SA), Darwin (NT), Karratha (WA), and Bunbury (WA).
BCNA develops a tailored program for each forum after consultation with health professionals and local services to help identify gaps and information needs in the local community.
Each forum features presentations from outside speakers, such as medical oncologists and psycho-oncologists, as well as presentations from local healthcare providers and experts across a range of topics such as lymphoedema, physiotherapy, and breast reconstruction. We also invite local support services such as Cancer Council to exhibit their information and support services during the breaks.
Below are some key learnings from the forums we have adopted into all future planning and design:
Partnering with consumers and community – As well as clinical experts, BCNA invites local consumers to share their lived experience as part of a panel discussion. Some are trained Consumer Representatives who are part of BCNA’s internationally recognised Seat at the Table program.
BCNA also relies on local connections to promote and support these events. Local breast cancer groups, council, newspapers, radio, and support services have rallied local attendance, particularly for those who may lack access to some modes of communication due to living in remote areas.
Adaption – The need to adapt to situations has been paramount. For example, in Wagga Wagga we pivoted to online delivery in responding to rising COVID-19 case numbers to prioritise attendees’ safety.
Tailored information – The forums respond to local information needs and have seen great success when bringing in expertise not always available locally. A particular emerging gap across many areas is access to information about psychosocial support. Sessions including psycho-oncologists have been particularly well received.
Forum programs are split based on diagnosis type, with separate streams for early and metastatic breast cancer. We know from engagement with our network that those living with treatable but not curable metastatic breast cancer have different information needs to those with an early breast cancer diagnosis, and are more likely to have these needs unmet by the health system.
Connection – Perhaps the most resounding impact of the forums has been in connecting people with a similar lived experience.
Many have told us attending a forum was the first time they had met another person with breast cancer, due in-part to many recent diagnoses being made during COVID-19 and lack of access to peer support groups. This has been particularly the case for those living with metastatic disease.
There is no greater value than witnessing someone who arrived at a forum alone, leave having made life-long connections with people who understand and can share their breast cancer experience.
BCNA’s Information Forums demonstrate the value of meeting rural and regional consumers in their own communities, building partnerships with local organisations, and providing face-to-face support.