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 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 45mins 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 [email protected]
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 www.cvsacyclingteam.org.au
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.
16-18 Jan - 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.
4 Feb - 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.
8-9 Feb - 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
2018 Cancer Voices Annual Report outlining our many activities, influence and outcomes during 2018
Jan
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.
Feb:
2-3 Feb, 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 - Research into Quality of Life issues identified by cancer survivors at http://www.abc.net.au/…/research-into-quality-of-li…/8241754 and Cancer study to focus on 'tsunami of survivors' http://www.abc.net.au/…/new-cancer-treatments-creat…/8241556
11 Feb, 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.
March:
Australian Institute of Health Innovation 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
Jan
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.
Feb
UniSA palliative & supportive care nursing students workshop with Mariann McNamara from Cancer Voices SA providing her perspectives on 'Difficult Conversations'.
March
Commence 2016 'Survivors as Teachers' series of 14 small group tutorials with Adelaide Uni 3rd year medical students. March-Aug.
April
Cancer Voices SA feedback submission to SA Health Draft Guidance Document for Human Research Biobanks and Associated Data
January -
Oncofertility Register: meeting to establish a SA chapter of this national online registry. Cancer Voices Reps Monique, Jon and Liam participated.
http://newsroom.unsw.edu.au/news/health/online-registry-will-help-cancer-patients-preserve-their-fertility
February -
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
Many of the oral presentation slides and posters are available on the Survivorship Conference website at http://www.survivorship2015.org/program-7/ and http://www.survivorship2015.org/poster-presentations/
Cancer Voices SA presentations at the 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
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
3 Feb - Ashleigh Moore OAM, Chair of Cancer Voices SA - Rest in Peace. Sadly Ashleigh passed away from lung cancer. About 300 people attended his funeral on 11 Feb 2014.
Activities organised by Cancer Voices
March - Ashleigh Moore Memorial bike Ride (see photos at https://www.flickr.com/photos/cancervoicessa/sets/72157643098474393 About 80 participants
April -Jul 'Patients as Teachers' - Cancer Voices commenced series of 16 x 1hr tutorials with small groups of 8 medical students at Adelaide Uni, describing the personal impacts of cancer
April- Nov - Exercise and Cancer - Cancer Voices commences discussions around increasing fitness coaches & personal trainers knowledge & understanding of cancer.
Oct-Exercise and Cancer Forum, CVSA in collaboration with Regency TAFE Diploma of Fitness, Julie Marker, Tricia LaBella, Jason Schild
April - Commenced Cancer Voices SA Scoop.it site for posting links to articles and reports relevant to people affected by cancer. Check it out now! Scoop.it
Oct - CVSA Challenge Ride event (photos) details
Presentations/ submissions by Cancer Voices SA
February - 'Patients as Teachers' personal impacts of cancer, presentation to UniSA palliative and supportive care nursing students by Tony Hamdorf
March - Response to Cancer Australia: draft Recommendations for the identification and management of fear of cancer recurrence in adult cancer survivors; contributed to Cancer Voices Australia submission
Cancer Voices Achievements in 2013
Presentations
-
Survivorship Conference - Flinders Centre for Innovation in Cancer
: 2-3 Feb 2013
What 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 SAFlinders Charter of Cancer Survivorship
- Cancer Voices SA had a substantial role in development of the charter, a tangible & enduring outcome of the conference
Health Consumers Alliance, Adelaide (Feb 2013) Advocacy Training.'Patients as Teachers' series of 10 tutorials for medical students (Mar-May 2013)