Making Metastatic Breast Cancer Count - Parliamentary Friends of Women's Health panel discussion

(From BCNA's Policy Advocacy & Support Services team)

We are excited to share with you an update on our National Metastatic Breast Cancer data roundtable that was held last week in Canberra.

The roundtable was a key recommendation of our inaugural issues paper, Making Metastatic Breast Cancer Count, launched in October of last year. After several months of careful planning and extensive engagement with the sector, we successfully held a national roundtable bringing together over 35 experts across cancer registries, cancer epidemiology, policy, research, and several peak clinical groups.

The roundtable was facilitated by Professor Sanchia Aranda AM who drew on her extensive expertise working in cancer control to help drive and moderate conversation. The resounding consensus from all those in the room was that there needs to be a shift to view cancer data as an ‘asset’ rather than a risk. The group work across three streams of ‘data and processes,’ ‘resources and technology,’ and ‘governance and policy’ to first identify barriers and challenges, and secondly workshop and prioritise recommendations to start to overcome these across short-, medium- and long-term timeframes.

Through extensive stakeholder engagement prior to the event, we arranged for key background context to be shared via re-reading as well as several presentations throughout the day by Professor Jason Pole, Cancer Australia, Danica Cossio, Professor Sue Evans and Dr Sally Lord.

Formal analysis will now be undertaken by BCNA to write-up the discussion from the day as a formal paper than can then drive advocacy to state/territory and federal government. We will also work further with our roundtable attendees and other key stakeholders to determine accountability and drive a joint advocacy plan.

Initial recommendations for investment in the short term included:

• Deriving metastases from existing and linked cancer data
• Funding smaller cancer registries to achieve minimum consistent standards.
• The need for a national cancer data strategy and subsequent framework, discussed as part of the upcoming Australian Cancer Plan.
• Leveraging of existing leadership groups and networks such as the Australian Association of Cancer Registries

We are incredibly excited by the discussions we facilitated last week and want to thank all attendees as well as Sanchia Aranda for her facilitation. We also pay a special thanks to our Consumer Reps, Dr Andrew Smith, Dr Jodi Steel, Louise Sinclair and Jodie Lydeker, from our project steering committee who were also in attendance to ensure that the consumer voice was present in everything discussed.

The day after the roundtable, we were delighted to be hosted by the Peta Murphy MP and Bridget Archer MP as part of the Parliamentary Friends of Women’s Health for a breakfast panel discussion at Parliament House. We welcomed over 50 guests, including politicians, health professionals, and people living with metastatic breast cancer at Parliament House, with many others joining us virtually from across Australia as well. Assistant Minister for Health and Aged Care Ged Kearney gave an opening address and welcomed everyone to Parliament House.

Our panellists, Peta Murphy, Sanchia Aranda, and BCNA Consumer Representative Lisa Tobin made reflections on both the preliminary outcomes of the roundtable, as well as what ‘visibility’ would mean to those living with metastatic disease. We are happy to report that we have recorded the breakfast panel and will shortly have it available for on-demand viewing.

Some key quotes from the breakfast panel:

Thank you so much for supporting this work and we look forward to sharing more formally with you very soon. If you have any specific questions, please reach out to the Policy & Advocacy team at policy@bcna.org.au