Our history and achievements
- Cancer Voices SA received the Ashleigh Moore Award for outstanding activity as an organisation supporting survivorship, presented at the COSA 2021 Survivorship Conference.
Life after cancer, redefined, reimagined and rebuilt
Ashleigh Moore Award Oration
Recipient: Cancer Voices SA
Speaker: Julie Marker
Survivors and leadership reimagined (including a tribute to the advocacy role of Chris Christensen)
Cancer Voices SA has been nominated as an organisation "which makes an outstanding contribution to the care of cancer survivors through diverse and innovative contributions to clinical practice improvement, research, policy”. Not bad for a 100% volunteer organisation led by cancer survivors and carers! We advocate for cancer survivors perspectives to be incorporated in an ongoing co-design manner.
Chris Christensen led Cancer Voices SA from 2017 until her death in Oct 2020, and we pay tribute to her contributions which built on the foundations established by Ashleigh Moore from 2007 - 2013. Organisations are more than individual leaders. The sustainability and capacity for maximising consumer involvement across the spectrum of treatment & care, in all aspects of research, policy and practice is still a ‘work in progress’. More than 10 years of advocacy and action will be illustrated by our roles as change agents, policy influencers, community mobiliser, co-designers, research collaborators, educators and experts by experience.
Cancer Voices SA contributions at this Conference:
Dr Agnes Vitry was on the Conference Program Committee representing Cancer Voices SA
Conference Convenor Bogda Koczwara
Program Committee Ray Chan, Haryana Dhillon, Eng-Siew Koh, Annie Miller, Sally Sara, Agnes Vitry, Fran Doughton, Marie Malica
Agnes also co chaired several sessions
Workshop: Self-Management of Cancer and Health
Co-Ordinator: Bogda Koczwara & Agnes Vitry
Chairs: Agnes Vitry & Fran Boyle
Yada Kanjanapan - COVID-19 and Cancer: Clinical Considerations
Vivienne Milch - COVID-19: Implications for Cancer Care
Danielle Spence - COVID-19 and cancer - the patient experience
Conference Presentations by Cancer Voices SA members
- Plenary: Neurotoxicity and neuropathy - Julie Marker– Finding my feet
Julie has been ‘finding her feet’ since peripheral neuropathy (initially debilitating) set in after oxaliplatin chemotherapy ceased in 2007. Coupled with ‘climbing the mountain of recovery' from a liver resection, frozen shoulder and ‘fear of another recurrence’... it’s been quite a journey, that’s for sure! My quest continues to manage and understand ongoing peripheral neuropathy from a survivors perspective.
What tools measure Quality of Life in paediatric cancer patients? A scoping review abs# 106
Victoria Bedford1, 2, Michala Short3, Shona Crabb2
The intention of this scoping review was to examine the health-related quality of life (QOL) tools that are being used to capture patient reported outcomes (PRO) in paediatric cancer, during or directly after radiation therapy. The aim was to be able to use this work for future research in the field of patient reported QOL for those undergoing proton radiation therapy in Australia at the soon to be built Australian Bragg Centre for Proton Therapy and Research, in Adelaide South Australia.
Consumer involvement in and impact on the development of a core outcome set for cancer survivorship abs# 150
Imogen Ramsey1, Julie Marker2, Nadia Corsini1, Amanda Hutchinson1, Marion Eckert1
Public or consumer involvement in research refers to the active inclusion of patients, carers, service users, and/or other relevant stakeholders in the research process. This adds a depth of knowledge that can ground research in the reality of lived experience, resulting in improved outcomes for those affected by the research. Consumer involvement in cancer survivorship research is critical to ensure that interventions, health services, systems, and policy are aligned with the needs and priorities of cancer survivors.
Survivors as teachers, helping students to thrive despite COVID abs# 160
Josephine Thomas1, 2, Julie Marker3, Cheri Ostroff4
‘Survivors as Teachers’ is an effective model for providing junior medical students with a window into the patient perspective (1,2,3). Now in it’s ninth year, survivors of cancer (patients and carers) become teachers in the clinical skills course. A survivor leads each small group session, telling their story in their own words. It’s an interactive format and students are encouraged to ask questions. Support for the speaker is provided by another survivor attending the session, including monitoring reactions of the student group during the session and debrief afterwards.
Karen van Gorp (deputy chair) recently represented Cancer Voices SA at the Ministerial Roundtable commencing development of a National Cancer Plan, an invitation only event convened by Cancer Australia, in Canberra. (22nd April 2021)
PoCoG webinar: Consumers in Research, from 3 perspectives (22nd April 2021 )
Ms Julie Marker is past Chair of Cancer Voices SA and has experience as a Consumer Representative on a number of state and national committees and advisory groups and a number of research projects. Julie will speak about her broad experiences as a consumer involved in research in a variety of roles, including as a consumer investigator and co-supervisor.
Dr Nadia Corsini is a Senior Research Fellow and Quality of Life Theme Coordinator in the Cancer Care Research Group at Rosemary Bryant AO Research Centre, University of South Australia. Nadia is passionate about consumer engagement in research and creating partnerships and will speak about her experience of consumer involvement in research from the academic perspective.
Dr Agustina Gancia is Senior Project Officer, Consumer Engagement at Health Translation SA. Agustina will speak about the benefits to researchers of consumer engagement, the how-to of consumer engagement, and available resources/how Health Translation SA can help with consumer involvement in research.
The big year of COVID-19
- Evolution and Revolution - 10+ years of cancer advocacy. (poster presentation) Chris Christensen, Julie Marker. Survivorship 2019 Conference, Sydney, 28-29 March 2019
- Chris Christensen, Cancer Voices SA Chairperson - speaking about her personal experience of cancer
- Cancer Voices 'walk/n/talk with researchers' commences. Cancer survivors - cancer researchers: Friday lunchtime 'walk and talk' group. Cancer survivors, carers, supporters, cancer researchers - join us for an informal walk along the Torrens riverside, starting from SAHMRI foyer at 12.30pm every friday, walking for about 1 hr and returning to SAHMRI. Or intercept us at Adelaide Uni footbridge pedestrian lights at about 12.50pm. All welcome for informal 'knowledge exchange' and networking opportunity. For more information contact firstname.lastname@example.org
- A gift from our supporters! Gorgeous rug gifted to Cancer Voices SA by the 'knit a care square' team. Thank you to Tricia LaBella for creating and coordinating this novel group activity.
- Cancer Voices cycling group rides every sunday morning, 8am from St Peters Girls School carpark off Hallett Rd, Stonyfell. More details at Cycling.
- Cancer Voices SA were one of 3 finalists in the SA Community Achievement Awards - in the Ricoh Australia Community Service Awards category, announced at the award ceremony on 1 Nov 2019
- COSA 2019 Conference (Clinical Oncology Society of Australia) had a number of presentations and contributions by Cancer Voices SA members:
- Chris Christensen spoke at the launch of the Australian Digital Health in Cancer Care Roadmap https://www.flinders.edu.au/content/dam/documents/research/flinders-cancer-research/TheAustralianRoadmapforDigitalHealthinCancerCare.pdf Chris was a consumer rep actively involved throughout this project.
- Poster presentation: Consumer Driven Priority setting - a practical example: Are iron deficiency, oxaliplatin and neuropathy linked? Brian Wall, Julie Marker
- Julie Marker spoke from a carer perspective in the breakfast session "What is needed to ensure optimal care and outcomes for older people with cancer in Australia",
- Girija Nadagoudar spoke from a personal perspective in the breakfast session: CALLED OUT: Exploring inequalities and improvements for CALD patient access to cancer clinical trials.
- The inaugural Consumer Advocates Award of the Rosemary Bryant Research Centre was awarded to Julie Marker, Deputy Chair of Cancer Voices SA, in recognition of a health consumer advocate who work tirelessly in partnership with health and or community services to improve consumer experience and health outcomes. This award was presented at the Annual General Meeting of the Health Consumers Alliance SA on 18 Nov 2019.
- Chris Christensen & Julie Marker met with politicians: Nick Xenophon, Stephen Wade, and representative for Minister Milanauskus re: Cancer Voices - cancer priorities for the new government. (Jan 2018)
- World Cancer Day - Flinders Centre for Innovation in Cancer morning walk, and Cancer Voices cycling group ride with commemoration to Ashleigh Moore OAM, founder, passed away 4 yrs ago. (Feb 2018)
- Cancer Voices SA poster presentation at Victorian Survivorship Conference: Survivors in the survivorship equation: survivor evidence + survivor views of best practice = better outcomes. Chris Christensen, Julie Marker (Feb 2018)
- 2018 Cancer Voices Annual Report outlining our many activities, influence and outcomes during 2018
2017 - 10 year anniversary of Cancer Voices SA
Cancer Voices cycling group participate in various events, in addition to our regular 8am Sunday morning rides every week throughout the year.
Cancer Voices walking group continues 1hr walks in Belair National Park, 9.30am every Tuesday.
2017 FCIC/COSA Survivorship Conference in Adelaide. Cancer Voices SA member Chris Christensen contributed on the Program Committee throughout 2016, then co-chaired the Healthy Living session and spoke on this panel. Other Cancer Voices members who were invited speakers were Tony Hamdorf, Karen van Gorp, Julie Marker.
Media - World Cancer Day 4 Feb: ABC News - Cancer study to focus on 'tsunami of survivors' www.abc.net.au/news/2017-02-04/new-cancer-treatments-creating-tsunami-of-survivors/8241556
UniSA Palliative and Supportive Care Nursing Workshops on 'Difficult Conversations'.
Wonderful, insightful personal stories presented by Lesley Shears & Maxine Williams that commenced the interactive discussions with students, and additional perspectives added by brief presentations from Chris Christensen & Julie Marker. Thank you again to Dr Kev OShaughnessy for excellent facilitation of these teaching sessions and inviting Cancer Voices speakers, for a 5th consecutive year.
Cancer Voices are assisting multiple researchers with their requests for consumers to be involved and provide feedback on their grant funding applications.
Bowel cancer consumers-researchers interest group meets again at SAHMRI with Dr Dan Worthley, Susi Woods & Tammy Lannagan.
Cancer Voices members submit their stories to provide context and personalised insights to the Draft SA Cancer Control Plan 2017-2020.
Australian Institute of Health Innovation (AIHI) workshop, 17 March 2017, Sydney. Speakers/ consumer panelists: CVSA Exec Team Stephanie Newell, Chris Christensen, Eric Browne, Julie Marker
Patients as Teachers – Adelaide University 3rd Year Medical Student Tutorials – ongoing March to September
UNISA Consumer Engagement in Health Care: Presentation to Professional Certificate Students – 27 April 2017
- Safety and Quality – presentation to Flinders University Masters Students – 25 May 2017
- Senate Inquiry into funding for research for cancers with low survival rates – 18 May 2017 - Chris Christensen, Jackie Barreau, Julie Marker appear before Senate Committee via teleconference
- Consumer Health Forum (CHF) Medicinal Cannabis Forum – 18 May 2017
- PoCOg Concept Development Workshop – 17 May 2017
- PC4 Scientific Symposium – 10 May 2017
- AGITG Consumer Advisory Panel – 11/12 May 2017
- Health Consumer Alliance (HCA) Consumer Advocate Network - Digital Health Update – 3 May 2017
- Consumer and community Involvement in Research Training Workshop – 20 June 2017
- Cancer Nurses Society of Australia Annual Congress – 15-17 June 2017
- Bowel Cancer Research Interest Group Meeting - 14 June 2017
- UNISA Allied Health Outcomes Calculator Launch – 13 June 2017
- SAHMRI South Australian Clinical Collaborative Research Meeting – 7 June 2017
- Mitcham Council Presentation of Community Grants – 5 June 2017
- South Australian Cancer Services Strategy Committee Meeting – 2 June 2017
- PC4 Concept Development Workshop – 1 June 2017
- Meeting with SA Pathology – 17 July 2017
- Advanced Care Planning Meeting – 10 July
- Launch of SA Genomics Health Alliance 30 August
- Presentation to the Adelaide and Mitcham Prostate Cancer Group – 24 August 2017
- Ministerial Roundtable - Chris Christensen in meeting with Federal Health Minister Hon. Greg Hunt. 23 August 2017
- UniSA Cancer Care Research Symposium 21 August
- SAHMRI-HCA Consumers in Research Committee meeting – 16 Aug
- SAHMRI Bowel Cancer research interest group 9 August
- First meeting of Bowel cancer consumers-researchers interest group at SAHMRI with Dr Dan Worthley, Susi Woods & Tammy Lannagan.
- Cancer Voices cycling group participate in various events, in addition to our regular Sunday morning rides every week throughout the year.
- UniSA palliative & supportive care nursing students workshop with Mariann McNamara from Cancer Voices SA providing her perspectives on 'Difficult Conversations'.
- Commence 2016 'Survivors as Teachers' series of 14 small group tutorials with Adelaide Uni 3rd year medical students. March-Aug.
Cancer Voices SA feedback submission to SA Health Draft Guidance Document for Human Research Biobanks and Associated Data
Bringing voices together: an interactive Knowledge Exchange initiative to reduce the gap between research, policy and practiceBringing voices together: an interactive Knowledge Exchange initiative to reduce the gap between research, policy and practice. Julie Marker, Jonathon Karnon, Ellen McIntyre, Carol Davy, Christina Hagger, Ellen Kerrins, Michael Cousins. Primary Health Care Research Conference, Jun 2016 Canberra.
Bowel cancer consumers-researchers Interest Group meet again to discuss progress with research at SA Health & Medical Research Institute.
Work after Cancer website launched http://workaftercancer.com.auhttp://workaftercancer.com.au after 2 years of work on the Return to Work After Cancer project Return to Work After Cancer project was completed. A collaboration with Flinders Centre for Innovation in Cancer,
Recovering from and surviving cancer: a consumer perspectiveRecovering from and surviving cancer: a consumer perspective Julie Marker Cancer Forum Vol 39 No. 2 Aug 2015 76-79
Concerns about threat to clinical trials at new RAH, Cancer Voices SA meet with Minister Snelling.
Trial quality questionnaires - evaluating the patient experience of participating in a clinical trial. Julie Marker. Australasian Gastrointestinal Trials Group ASM, Sept 2016, Melb
Cancer Voices contribute to Rapid Reviews on several aspects of Cancer Survivorship with UniSA researchers.
Bowel cancer screening symposium, GESA Annual Conference, Adelaide. Consumer reps -Julie Marker (Cancer Voices SA, AGITG Consumer Advisory Panel member) & Dan Kent (AGITG CAP) participated in panel sessions throughout the 2 day symposium.
Consumers and communities – key partners in biobanking. Julie Marker, Debra Kay, Jan Mumford. Australasian Biospecimen Network Association 2016 Annual Conference, 13-14 Oct in Adelaide.
Cancer Voices 2016 Challenge Ride - 6th annual event, 70, 35 & 20km ride routes, about 100 riders participated - photos now available at https://www.flickr.com/…/canc…/albums/with/72157675516178316 Thank you to Con Nakos, Julie Marker, Eric Browne....
SA Statewide Survivorship Framework - meeting to celebrate achievements after 2 year project involving Chris Christensen, Julie Marker & Karen van Gorp from Cancer Voices SA
Ovarian Cancer SymposiumOvarian Cancer Symposium, 10 Dec 2016, Sydney, attended by Chris Christensen
Chris Chrisensen elected as Chair of Cancer Voices SA.
- Oncofertility Register: meeting to establish a SA chapter of this national online registry. Cancer Voices Reps Monique, Jon and Liam participated.
- 12 Cancer Voices survivors participated in a 'GP-oncology shared care for survivorship' workshop organised by the Primary Care Collaborative Cancer Clinical Trials Group (PC4).
- UniSA Palliative and Supportive Care Nursing Forum - 'Survivors as teachers' presentations by Kathy Seager and Cath Caon.
- The 2015 national cancer Survivorship Conference held at the Adelaide Convention Centre on 6-7 February 2015, and convened by Flinders Centre for Innovation in Cancer.
- The inaugural Ashleigh Moore Oration was presented by Sally Crossing AM, for her outstanding contributions to clincal practice, research, policy and advocacy affecting cancer survivors. Listen to the Oration at https://www.youtube.com/watch?v=Ag6tSDuM3r4
- oral presentations and posters by Cancer Voices SA 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
- Cancer Voices SA is an active partner in the 'Return to work after cancer' project with reps on the project Steering Committee: Monique Bareham, Chris Christensen and Julie Marker
- Supporting Return to Employment after Cancer in Disadvantaged Communities abs# 54 (poster) Bogda Koczwara
- and Julie Marker made key contributions as member of the Consumer Advisory Groups of Cancer Clinical Trial Groups
- 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
- 'Yarning about cancer' - presented by Julie Marker & Sandy Miller at SA Cancer Services planning day for 2016-2020 Cancer Control Plan, Aboriginal companion document
- Commenced the 2015 'Survivors as teachers' series of 13 x 1hr tutorials with 150 Adelaide Uni medical students (13 groups of 12 students).
- Cancer Voices SA 2015-2020 Strategic Plan - update and planning process skillfully faciliated by Deputy Chair Chris Christensen.
- Pantani the movie - film night/ fund raiser organised by friends of Cancer Voices
- Return to Work after Cancer projectReturn to Work after Cancer project - Active invovement of Cancer Voices reps (Monique Bareham, Chris Christensen, Julie Marker) in conducting the focus groups, forums to hear the experiences and determine the gaps in services and supports. Partnership with Flinders Centre for Innovation in Cancer
- SA Statewide Survivorship Framework project Workshop - Cancer Voices reps Chris Christensen & Julie Marker
- Transforming Health - consumer workshop convened by Health Consumers AllianceHealth Consumers Alliance. Active input from Cancer Voices Chris Christensen & Julie Marker
- SA PsychoOncology Research Group - Cancer Voices reps Chris Christensen & Julie Marker involved
- 'Survivors as teachers' series of 11 x 1hr tutorials with 250 nursing students at Flinders Uni School of Nursing
- Cancer Voices Walking Group commences, every Tuesday morning 10am, 1hr walks in Belair National Park. All welcome.
- Consumers involvement in research - presentation by Julie Marker at Flinders Uni PhD students Knowledge Exchange workshop
- SA Statewide Survivorship Framework project Workshop - presentations by Cancer Voices reps Chris Christensen & Julie Marker, active input also from Monique Bareham & Don Piro
- Men's Health Forum - attended by Cancer Voices Julie Marker & Caroline Phillips
- Consumer feedback sought by RAH Ethics Committee on use of tissues with outdated BioBanking consent forms. Cancer Voices opinions presented.
- Return to Work after Cancer projectReturn to Work after Cancer project - Consensus Group meeting. Active invovement of Cancer Voices reps (Monique Bareham, Chris Christensen, Julie Marker). Partnership with Flinders Centre for Innovation in Cancer
- Reducing the Gap between Research Policy and Practice Initiative - Transforming Health: Shaping the Research Agenda WorkshopTransforming Health: Shaping the Research Agenda Workshop. Shared initiative of PHCRIS (Primary Health Care Research & Information Service), HSRAANZ (Health Services Research Association Australia & New Zealand), Cancer Voices SA, SAHMRI (SA Health & Medical Research Institute), Flinders Uni, Adelaide Uni
- Consumer engagement in research - presentation by Cancer Voices Julie Marker at Primary Health Care Research pre-Conference workshop
- Medical Benefits Scheme ReviewMedical Benefits Scheme Review - Consultation meeting - attended by Cancer Voices Chris Christensen in Adelaide
- Chemotherapy under-dosing incident. Cancer Voices SA (Executive Team) send letter of concern, & follow up action in collaboration with Health Consumers AllianceHealth Consumers Alliance through various avenues around Safety & Quality, Medicines Policy,
- Prostate Cancer Symposium - attended by Julie Marker & Caroline Phillips
- CareSearch Palliative Care Knowledge NetworkCareSearch Palliative Care Knowledge Network - National Advisory Group meeting - Cancer Voices rep Mariann McNamara
- Cancer research topics presented at UniSA workshop by Cancer Voices Dr Agnes Vitry
- Cancer Voices Annual Challenge Ride - 70, 35 & 20km ride routes, more than 150 cyclists
- GastroIntestinal Cancer Community Forum at Gawler
- Reducing the Gaps between Research, Policy, Practice - Breakfast Conversation - workshop led by Cancer Voices SA with Health Consumers Alliance SA, Primary Health Care Research & Informations Service, Health Services Research Association of Australia & New Zealand, SA Health & Medical Research Institute. About 50 participants.
- Cancer Voices Annual General Meeting
- COSA Annual Scientific Meeting - Cancer Voices was represented by Chris Christensen, Deputy Chair - speaking up for people with a rare cancer
- Chemotherapy underdosing - Marshall Review released.
Official Launch of Cancer Voices SA by Health Minister John Hill.
CVSA Launch Speech by founding Chair of Cancer Voices SA
‘Raising a Voice’ Consumer Forum was held and include topics: Complementary and alternative cancer medicines; New drugs and therapies; Accessing quality cancer information; Cancer carers – needs and support.
Consumer Forum Summation presented to the Clinical Oncological Society of Australia (COSA) National Conference
General public meeting: members endorse submitting ‘Application for Incorporation’ of Cancer Voices SA.
'Foundations For The Future' Workshop - 2 days of discussion and planning facilitated by A Moore (Chair) and M Loughead (from HCA)
Cancer Voices SA survey of cancer consumers and support groups across South Australia – identified community needs and priorities for an advocacy group.
Steering Committee of interested members of the public formed to develop concept for a Cancer Voices group in SA – Ashleigh Moore elected Chair.
Health Consumers Alliance (HCA) in partnership with the hold a public information evening on forming a cancer consumer advocacy group for South Australians
Before July 2006
Cancer Voices cancer advocacy groups were being formed in most states and a peak was being developed; each was based upon the original model that was founded in 2000.