Current Action

Maintaining awareness and responding to emerging issues is an important component of what Cancer Voices SA 'do', in addition to our strategic, planned activities.

 

Cancer Voices has an established long-term commitment to the issue of 'Survivorship'.  

We demonstrate our capability and persistence through our leadership and partnerships with other consumers and organisations, clinicians, researchers and policymakers.  For example:

 

Cancer Voices 'survivor led' initiatives:

- leading by example with our physical activity initiatives - cycling group (every sunday morning since January 2009) and walking group (every tuesday morning since June 2015).  

'Building yourself to better cope': a case study of a cycling team led by cancer survivors. Hons Psychology thesis in collaboration with Cancer Voices, and poster presentation at the inaugural Cancer Survivorship Conference (2013)

-'Survivors as teachers' speakers in medical, nursing and other health professionals classrooms (since 2012).  See a recent poster Cancer Voices presentated at the 2018 Victorian Survivorship Conference summarising 6years of this initiative: Survivors in the survivorship equation: survivor evidence + survivor views of best practice = better outcomes.

- Cancer Survivors’ Framework for Survivorship CareCancer Survivors’ Framework for Survivorship Care (March 2015)    A Survivorship Framework from the consumer perspective  

-Consumers in ResearchConsumers in Research - an initiative for training and matching survivors with researchers.  More than 100 trained consumer reps are part of this network of consumers, interested to participate as research advisory roles.  To request a consumer representative for research - complete this formcomplete this form.

 

Presenting the consumer perspective of survivorship in posters and presentations (see publications list below)

 

Cancer Voices in partnership with others:

‘Return to Work after Cancer’ project (2yrs Cancer Australia funded project which developed the www.workaftercancer.com.auwww.workaftercancer.com.au  website in partnership with the Flinders Centre for Innovation in Cancer and others http://workaftercancer.com.au/project-partners/http://workaftercancer.com.au/project-partners/ )

Cancer Australia’s Principles of Cancer Survivorship which provides a national framework. Cancer Voices advocated for and worked closely with CA on this project as well as the Clinical Oncological Society of Australia COSA Model of Survivorship Care. Both were released in 2017 recognising survivorship from diagnosis, as per the international definition.

 Cancer Australia:              https://canceraustralia.gov.au/publications-and-resources/cancer-australia-publications/principles-cancer-survivorship          

COSA:                                   https://cosa.org.au/media/332339/cosa-model-ofsurvivorship-care-appendix-1-final-20161101.pdf

  

Statewide South Australian Survivorship Framework projectStatewide South Australian Survivorship Framework project - a 2yr project funded by the National Cancer Expert Reference Group to develop a plan and templates for routinely implementing a surivorship careplan, treatment summary and needs assessments for all cancer survivors - across the agespan from paediatric to geriatric, in all settings including rural as well as major public hospital centres, and across all cancer types. Cancer Voices were key partners throughout this project and continue to advocate for ongoing translation.

Cancer Survivorship Conferences - Cancer Voices have played a key role on the planning committees, as presenters and session consumer co-chairs from the inaugural to current bi-ennial national Cancer Survivorship Conferences, in 2013, 2015, 2017 and now in the planning for the 2019 event.

Flinders Charter of Cancer SurvivorshipFlinders Charter of Cancer SurvivorshipFlinders Charter of Cancer Survivorship - Cancer Voices SA had a substantial role in development of the charter, a tangible & enduring outcome of the 2013 Survivorship conference

Australian Core Outcome Set for Survivorship Patient Reported Outcomes. Cancer Voices has a role as PhD Consumer-co-supervisor and consumer advisory support to Imogen Ramsay's PhD project to: Develop a generic core outcome set (COS) to facilitate population monitoring of health-related quality of life (HRQOL) in cancer survivors post-treatment. 

 

Cancer Voices publications:

 Survivors in the survivorship equation: survivor evidence + survivor views of best practice = better outcomes.  Chris Christensen, Julie Marker;  8-9 Feb 2018 - Cancer Voices SA poster presentation at the Victorian Survivorship Conference

 Cancer Voices SA presentations at the 2015 Survivorship Conference included:

“More than just telling my story” when cancer survivors become teachers:  Julie Marker, Louise Bastian, Stephanie Newell, Kath Lockier

 Why aren’t we ‘Measuring what matters to cancer survivors’ in Australia? abs# 59 (poster)  Julie Marker, Agnes Vitry

 Working together to ensure structured exercise is safe and more accessible for cancer survivors  abs# 72(poster) Jason Schild, Tricia LaBella, Julie Marker 

Research on cancer survivorship in Australia: current status, gaps and needs abs# 78 (poster) Agnes Vitry, Julie Marker

Recovering from and surviving cancer: a consumer perspective   (2015) Cancer Forum

Survivorship Conference - Flinders Centre for Innovation in CancerSurvivorship Conference - Flinders Centre for Innovation in CancerSurvivorship Conference - Flinders Centre for Innovation in Cancer: 2-3 Feb 2013 

What matters to a SurvivorWhat matters to a SurvivorWhat matters to a Survivor - Dr Agnes Vitry, Cancer Voices SA 
Cancer Conversations  - Ashleigh Moore & Julie Marker, Cancer Voices SA 
Survivors supporting Survivorship; Survivorship as a global movement - Ashleigh Moore, Cancer Voices SA 

Students perceptions of a consumer-led discussion group format to improve awareness of the patient perspective  (poster) - Dr Jo Thomas, Dr Agnes Vitry, Julie Marker

 

Supporting Return to Employment after Cancer in Disadvantaged Communities  abs# 54 (poster) Bogda Koczwara 

Cancer Voices  individual members of Consumer Advisory Groups of  Cancer Clinical Trial Groups had roles in these presentations:

Strengthening survivor’s roles in cancer trials advisory groups. abs# 53 (poster) Joint Community Advisory Group (JCAG)

 'Engage' Community Forums to raise awareness of Gastro-Intestinal cancers – an initiative led by GI Cancer survivors and carers. abs# 44 (poster) GI Cancer Institute/Australasian Gastro-Intestinal Trials Group (GICI/AGITG) Consumer Advisory Panel 

 

 

 

 

 

Radiotherapy under-dosing incident (July 2008) - ACTION on an issue of concern 

The SA Dept of Health revealed that 869 cancer patients received a radiotherapy dose up to 5% less than prescribed during a 2 year period, July 2004-2006.

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Contact

Cancer Voices South Australia

 

Ph.  0431 691 956 

 

PO Box 588, Kensington Park SA 5068