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Newsletter No. 80 December 2020 Message to Members We finish 2020, our 20th anniversary year, with our 80th The development of the fifth NSW Cancer Plan continues edition, and a bumper issue it is. Our library of with the completion of three months of extensive newsletters is our record of activity and is consulted consultation involving over 650 individuals representing regularly. We have drawn on past issues to provide many stakeholders across the cancer and health context and background for various issues in this edition. continuum. (P4). This year, in response to the challenges brought on by This time last year we were in the grip of a devastating COVID–19, the annual NSW Premier’s Research Awards fire season and drought which was followed by floods. were hosted online by the Cancer Institute NSW, with As if that wasn’t enough to contend with, we were then one award announced every day on social media from confronted with a global pandemic. The year has 23–27 November. (P16). undoubtedly been challenging and will be one for the record books. It has affected everyone everywhere and At a national level, Cancer Voices has had a full year working with the Prostate Cancer Foundation Australia everything that we do, forcing us to adapt and innovate. on a revamp of resources (P19) and the development of If we have made it through 2020, we can do anything! A a survivorship framework (P18); has endorsed the whole new language has developed and has become Cancer Survivorship Care Consensus statement (P17) normalised. New phrases, terminologies, words and and has continued with its involvement with the Cancer behaviours have become commonplace: social Council Australia collaboration of cancer organisations. distancing of 1.5m, so many people per 2 or 4 square November saw the launch by Dr Brendon Murphy of the metres, lockdowns, clusters, isolation, border closures, Consumers Health Forum Consumers Commission wearing masks, PPEs, hand sanitisers and hand washing, report, Making Health Better Together (P21), and the COVID testing, working from home, restricted numbers Standard for Informed Financial Consent was for events and gatherings, COVIDSafe, online and hybrid launched by Cancer Council Australia (P17). meetings using Zoom (in some cases being ‘Zoomed out’) and other platforms became the new norm to Our report, Genetic Testing, the fourth in our Special replace face to face meetings and larger events to Report series, looks at genetic/genomic testing and how it could impact on a person’s health outcomes, and on enable our work and lives to continue. Phrases the role of the genetic counsellor. Full report P13-15. commonly heard included ‘You are on mute’ and ‘Turn on your video’. Our AGM in scheduled for February, details P2. The One of the major COVID legacies for health is telehealth. Nomination Form and our Issues Form can be found on On 27 November Minister Hunt announced that P24-25. Do give consideration to the Issues Form which ‘widespread telehealth will become a permanent part of assists in informing our advocacy focus and direction. Australian healthcare with further details to be available in early 2021.’ Just as we were cautiously looking forward to Christmas https://www.health.gov.au/ministers/the-hon-greg- COVID has reared its head and thrown plans and hunt-mp/media/doorstop-interview-on-27-november- arrangements in the air across the country. Complacency 2020. However, a negative impact has been on is our biggest enemy. We still need to be vigilant as we researchers with funding sources becoming scarce. are still in the grips of a global pandemic. We thank all those in health who have worked tirelessly throughout As part of the continuing focus on the impact of the 2020 to both care for and keep people safe. unprecedented bushfires in Australia and particularly New South Wales in 2020 and 2021, Cancer Voices has Our best wishes to all for a safe and peaceful festive and sent letters to the Minister for Health, the Resilience holiday season. We now look to 2021, to the challenges NSW Commissioner, and the NSW Rural Fire Service and the opportunities. Take care and stay safe. Commissioner regarding a mobile health monitoring Elisabeth Kochman (Chair) service (P4). and the CVN Executive Team Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 1
4 February 2021, World Cancer Day: I am I will Together all our actions matter https://www.worldcancerday.org/ NOTICE OF ANNUAL GENERAL MEETING 2021 Cancer Voices NSW Inc. invites you to attend its AGM on Friday 19 February 2020 at 9.30am, Level 1, 280 Pitt Street Sydney. Nominations for the Executive Committee and Office Bearers are invited. Nominees should be supported by their voting member, cancer support or advocacy group on the Nomination Form provided with this Newsletter, see Page 24. Please complete and mail to PO Box 713, Milsons Point NSW 1565 or scan and email to info@cancervoices.org,au by 12 February 2021. If you are interested in working with CVN’s Executive Committee, we encourage you to contact us ASAP. We welcome all Cancer Voices Members to attend the meeting. If you plan to attend the AGM, please advise us by 12 February 2021. Final arrangements will be made closer to time depending on COVIDSafe requirements . Our annual report will be tabled at the AGM and will then be available on our website. COSA Survivorship Conference, 18-19 March 2021 The 5th national Cancer Survivorship Conference will be a hybrid meeting, online and face to face. The face to face components of the conference will be held at the Adelaide Convention Centre. Themed “LIFE AFTER CANCER – REDEFINED, REIMAGINED AND REBUILT Visit the website at https://www.survivorship2021.org/ CHF Virtual Summit 2021: Shifting Gears andAustralia and New Zealand Consumer Experience and Leadership in Health Summit Australasia’s first consumer health summit in March 2021 will be virtual, putting this high impact event in reach of a wider audience within Australia, New Zealand and worldwide. The CHF Summit 2021: Shifting Gears draws together consumers and other leaders from the health sector. We will explore the latest research and developments which drive the health system towards a consumer-centred culture and services. The spotlight will be on how consumers play an important part in health policy, research and care design. What’s the theme? Consumers as leaders in healthcare will be a central theme of this first Australian and New Zealand Consumer Experience and Leadership in Health Summit. View the Summit website: http://www.chfsummit.com.au/ See the Summit poster 2 | Page www.cancervoices.org.au the Voice of People Affected by Cancer
CVN Committee News Our last EC meeting was 24 November, with a follow up Recent representative appointments 1 December to complete unfinished business due to a Cancer Voices continues to provide nominees on request guest presentation. *The CIR Review Steering by stakeholders. These requests are usually made by Committee met on 20 November and 3 December, cancer professional organisations, government agencies further details P10. *We have some role changes within and health service planners. Recent appointments our CIR Program, details P8. *Planning is underway for include: our AGM and EC workshop in February along with Cancer Australia (CA) - National Pancreatic Cancer several conference presentations. *Our diaries are Roadmap Steering Group. already beginning to fill with commitments for 2021. Cancer Voices member Gino Iori was appointed to the Special thanks! CA National Pancreatic Cancer Roadmaps Steering Group Once again, we extend a big thank you to Geoff Vass, in October. This Group will provide CA with strategic, from Cadzow TECH, who continues to provide pro bono high level expert advice related to the development of a support on matters IT and to Sandra O’Sullivan for National Pancreatic Cancer Roadmap (the Roadmap). matters financial. We are grateful for all the support, The Roadmap will improve outcomes for people affected assistance and advice provided by both. by pancreatic cancer through the identification of key priority areas for action over the next five years to guide Vale – Chris Christensen evidence-based pancreatic cancer research and best We were saddened to hear the news of the practice cancer care. passing of our Cancer Voices SA (CVSA) Health Consumers NSW Board friend and colleague, Chris Christensen on We are delighted to announce that 31 October 2020. Several CVN members the CVN nomination of Murray joined her moving farewell online on 12 McLachlan had been successful and November. Chris was Chair of CVSA. She that the announcement of his showed amazing tenacity and appointment to the HCNSW board determination and used her own scenario was made at the HCNSW AGM held for the betterment of those affected by 16 October via Zoom. John Garbutt, cancer. A shining light and inspiration to all. Chair HCNSW Board, and Neil Fraser, To quote her colleague, friend and former Deputy Chair, were also reappointed. chair, Julie Marker, ‘she has worked to HCNSW Board terms are for three improve health policies, health service Chris Christensen (left) and years. There were 23 attendees delivery and research activities spanning Julie Marker, CVSA including three Cancer Voices the cancer pathway.’ members. Chris was diagnosed with primary peritoneal cancer in Congratulations Murray, this gives us a voice for cancer 2010. She joined CVSA in 2013 and became chair in and health services in NSW through our state consumer 2017. Chris was highly regarded and will be missed by all organisation. HCNSW 2020 Annual Report is available at who knew her. https://www.hcnsw.org.au/news- On 3 December, we were delighted to hear the COSA resources/publications/ announcement of the Ashleigh Moore Award. ‘In Cardio-oncology recognition of the award Julie Marker, past Chair of Though well established in the US and Europe for some Cancer Voices SA will deliver an oration “Survivors and time, cardio oncology is a new field in Australia. Lee leadership reimagined: " including a tribute to the Hunt has joined a special interest group which includes advocacy role of Chris Christensen at the COSA cardiologists, pharmacists, medical oncologists, radiation Survivorship Conference in March 2021 in Adelaide. See oncologists and researchers. Another of our CIR Page 2 for details. consumer community, Jacqueline Lesage from Victoria, has taken on the consumer role in several cardiotoxicity projects. Tribute to a cancer advocate Karen Benn: a great example of what an advocate can accomplish “Karen’s wit, beauty, and dedication to breast cancer advocacy will be greatly missed, but never forgotten. Her life and career serve as an example of what an advocate can be and what an advocate can accomplish on behalf of others. I think that is what she would want us to remember the most.” https://cancerworld.net/obituary/karen-benn-a-great-example-of-what-an-advocate-can- accomplish/?utm_source=Newsletter&utm_medium=Email&utm_campaign=23Sep Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 3
Consumer Advocacy Update clinicians, improved health outcomes for the Can we persuade the NSW Government to establish a population and improved cost efficiency of the health ‘Firies Bus’? system. As part of the continuing focus on the impact of the A session by Gordana Vasic, the Manager Health Care unprecedented bushfires in Australia and particularly Interpreter Services of Western Sydney Local Health New South Wales in 2020 and 2021, Cancer Voices has District (LUD) provided insights into the LHD being sent letters to the Minister for Health Brad Hazzard, early adopters of ‘my virtual care’. Having become the Resilience NSW Commissioner Shayne champions they were well prepared to adapt their Fitzsimmons, and the NSW Rural Fire Service services to offer virtual interpreter services during the Commissioner Bob Rogers. A significant element of restrictions of COVID-19. The time and money saved the letters is the Cancer Voices proposal that the NSW on travel for interpreter’s meant more time could be Government establish a mobile health monitoring spent with patients and an increased number of service for bushfire fighters along the lines of that sessions were possible. The change was well received provided to workers exposed to dust diseases through by patients, families and the interpreters. the icare mobile Lung Screen unit: https://www.icare.nsw.gov.au/employers/employer- Shirley Baxter obligations/lung-screening-service#gref (sometimes called the ‘Lung Bus’). Cancer Voices is eagerly awaiting responses to its proposal for the NSW Cancer Plan establishment of a ‘Firies Bus’. As previously reported, Nous Group, an independent Murray McLachlan consulting firm, continues to work with the Cancer Institute NSW and key organisations on the Update: We have been advised that as this issue falls development of the fifth NSW Cancer Plan. within the administration of the Hon Kevin Anderson MP, Minister for Better Regulation and Innovation, our CVN is involved through the NSW Cancer Plan correspondence has been forwarded for his Governance Committee which last met on 16 consideration and appropriate action. November and CVN representatives have participated in the stakeholder engagement process and some of the co-design workshops. Early consumer 2020 Value Based Healthcare Virtual Forum – NSW consultations, interviews with senior stakeholders and Health eight co-design workshops have been completed. The Value Based Healthcare Virtual Forum was held David Currow, Chief Cancer Office and CEO CINSW, over 2 days on 9-10 November 2020. provided a 30 minute briefing on 15 December which included high-level insights and themes that have Elizabeth Koff, Secretary of NSW Health opened the emerged from the consultations, which will ultimately Forum which offered free registration and flexibility to shape the next NSW Cancer Plan. More than 650 register for individual sessions. This provided great individuals representing government, non- flexibility for health workers and consumers to select government, health services, researchers, not-for- sessions of most interest and participation within profit and community organisations have been work and other commitments. involved and contributed over the last three months. Workshops were informative and interactive and There will be opportunities for further input including Masterclasses were also included over the two days during a public consultation period in early 2021. The offering a wide selection of topics with a major focus development of the new plan is still on track for on patient centred care. implementation from 1 January 2022. Value based healthcare was a component of the Elisabeth Kochman Program where we were able to hear more about how virtual care can contribute to the quadruple aim of improved experiences for individuals, families and carers, improved experiences for service providers and 4 | Page www.cancervoices.org.au the Voice of People Affected by Cancer
NSW Budget: cancer-related and palliative care The budget included a funding boost of $56million for funding extended; new and redeveloped hospitals the provision of palliative care services in people’s homes. It includes: The NSW State budget, normally delivered in May each year, was this year delayed due to the timing of $30.4 million over four years to support multi- the federal budget and the impact of COVID-19. The disciplinary approaches for end of life and palliative 2020-21 State budget was delivered on 17 November care to meet the needs of patients and their families 2020, with almost $50million ($49.6million) allocated and carers. This includes: to new cell and gene therapies across a range of • $4.5 million per year for up to 35 additional allied diseases, with the funding including the support of health professional positions such as occupational access to: therapists, speech pathologists, dietitians and • CAR T-cell therapy (a therapy which modifies a physiotherapists, to address patients’ physical person’s immune cells to attack their cancer, thus health needs and to support safe discharge from offering hope for remission and longer-term hospital so that people can be cared for at home if survival for children and young adults with Acute they choose. Lymphoblastic Leukaemia) and adults with diffuse • $1.2 million per year, from 2021/22 to implement large B-cell Lymphoma education and training to develop and grow the • monoclonal antibody therapy for neuroblastoma specialist palliative care workforce, and enhance that vastly improves the outcomes for children capability across the health workforce. with this type of cancer. $2 million per year to improve access to bereavement In a pre-Budget announcement, the Government and psychosocial support services for people provided $1million to a new cancer and wellness experiencing complex grief. centre in Echuca in Victoria to help deliver chemotherapy and dialysis to cross-border $25.6 million over four years to increase End of Life communities. Echuca is ‘twinned’ with the NSW town home support packages across NSW, including: of Moama in a similar way to Albury-Wodonga. The • case management and services such as; new centre will provide access to haematologists, personal care, domestic support, assistance medical oncologists, nephrologists, and radiation with meals, in-home respite and transport to oncologists. NSW and Victoria have a long-standing appointments; agreement for cross-border health care, with NSW providing a reimbursement of about $63million to • the new funding will supplement this program Victoria in addition to the $120million Health NSW with an additional 5,000 packages. provides to Albury-Wodonga Health for NSW The palliative care funding is in addition to the residents. Cancer diagnostic services are provided for $220million allocated to palliative care services each Moama residents at Deniliquin hospital. year. Significant funding of new and redeveloped hospitals Note: Information in this article has been adapted and associated health services in rural and regional from the NSW Budget media releases from the areas of NSW in the budget included: Treasurer, Dominic Perrotet and the NSW Minister for • Wyong Hospital redevelopment (ongoing) Health, Brad Hazzard. • Maitland Hospital (new) Murray McLachlan • Dubbo Hospital redevelopment and Western Cancer Centre in Dubbo (new) • Broken Hill Medical Imaging and Breastscreen Parliamentary inquiry into health services in South Service refurbishment West Sydney Growth Region • Inverell and Glenn Innes hospitals redevelopment A report of the NSW Parliament Legislative Council’s • Coffs Harbour Hospital expansion inquiry into the current and future health services in • Wagga Wagga, Tumut, Griffith and Albury the South West Sydney Growth Region has just been hospitals redevelopment released. • Goulburn and Bowral hospitals redevelopment. Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 5
There are issues in the report that Cancer Voices has Inquiry Report: identified and discussed relevant to provision of https://www.parliament.nsw.gov.au/lcdocs/inquiries/ cancer services, some of which we discussed during 2579/Report%20No%2055%20-%20Current%20and%2 our recent EC meeting including: 0future%20provision%20of%20health%20services%20 • equity issues, principally a perceived inequity in%20the%20South- in funding of health services (Chapter 3) West%20Sydney%20Growth%20Region.pdf • chronic diseases prevention and management Following is a link to the submission to the inquiry by (Chapter 5) Angela Lonergan, who is a member of Cancer Council • palliative and aged care (Chapter 5) NSW’s South West Sydney Cancer Advocacy Network. • communication and coordination among Angela refers to the quality of cancer treatment and health providers (Chapter 5) care over a range of cancer types she has received • role of private health providers and over many years in the region, but points to issues of community services in a public health network gaps in allied health support, a lack of psychological (Chapter 5). support accompanying a cancer diagnosis and during treatment, difficulties in accessing lymphoedema While the context is South West Sydney, the issues are services, and transport to treatment. common across the wider NSW health system. Submission:https://www.parliament.nsw.gov.au/lcdoc s/submissions/68019/0042%20Ms%20Angela%20Lone rgan.pdf Voluntary Assisted Dying in NSW in 2021 - Have your from Go Gentle Australia and the opportunity to say about Cancer Voices’ further involvement discuss issues using the Zoom ‘Chat’ facility. The Cancer Voices Executive Committee has The Executive Committee has subsequently held two considered issues associated with voluntary assisted lengthy discussions about voluntary assisted dying and dying (VAD) legislation in NSW over the course of palliative care-related issues and the DWD invitation 2020, in particular an invitation from Dying with to Cancer Voices for further involvement, including: Dignity NSW (DWD) to Cancer Voices to become more • a presentation from and discussion with Penny fully involved in the DWD campaign in support of the Hackett and Shayne HIgson on 22 September 2020; introduction of voluntary assisted dying arrangements in NSW. • a presentation from and discussion with Dr Sally Greenway, Director, Supportive and Palliative This began with a meeting of the Cancer Voices Medicine, Western Sydney Local Health District on Leadership Team (Elisabeth Kochman, Chair; Shirley 24 November 2020. Baxter, Deputy Chair; Murray McLachlan, Deputy Chair) with DWD representatives (Penny Hackett, • The independent member for Sydney in the NSW President; Shayne Higson, Vice President, and Dr Liz Parliament, Alex Greenwich, announced on 14 Jacka, Board Member) on 23 January. The meeting December 2020 that he will draft legislation, based provided the opportunity to discuss DWD’s efforts in on the Western Australia model, that will ‘create a previous years to achieve the passage of voluntary framework for people in NSW to access voluntary assisted dying legislation in NSW, as well as where assisted dying’. DWD at that stage saw the issue developing. https://www.alexgreenwich.com/media_release_a ssisted_dying_legislation?utm_campaign=update_ It was thought that DWD would probably put its 387&utm_medium=email&utm_source=alexgreen campaigning on hold given the impact of COVID-19 wich and the timing of the NSW electoral cycle. However, the DWD campaign, which aims to achieve the • As a Cancer Voices member, you will have the consideration of a draft voluntary assisted dying Bill by the NSW Parliament in 2021, was relaunched on 1 opportunity to provide your views to the Executive October 2020. The launch featured Andrew Denton Committee on whether, and the extent to which, CVN should be more fully involved in the DWD campaign. The short survey will take place in January 2021. 6 | Page www.cancervoices.org.au the Voice of People Affected by Cancer
Links to some background reading including the https://onlinelibrary.wiley.com/doi/pdf/10.1111/imj.13 current Cancer Voices NSW Voluntary Assisted Dying 951 Position Statement (which was initially adopted in July • Overview of euthanasia and assisted dying in Australia: 2017) to assist in your thinking are provided below. https://end-of-life.qut.edu.au/euthanasia The position statement emphasises the importance of • Navigating the assisted dying debate: people with cancer having the right to understand all https://www.goodsams.org.au/article/navigating-the- of the choices available to them, and therefore Cancer assisted-dying-debate/ Voices has a role to advocate for greater choice for • Ethical challenges about assisted dying (an Australian people with cancer in relation to their treatment medical oncologist’s view): options. https://www.goodsams.org.au/article/navigating-the- assisted-dying-debate/ Current Cancer Voices position statement (initially adopted in July 2017): • A Canadian philosopher’s view: https://www.cancervoices.org.au/wp- https://mercatornet.com/putting-the-pros-and-cons-of- content/uploads/2018/08/CVN-Position-Statement- euthanasia-under-the-microscope/47619/ Voluntary-Assisted-Dying-May-2018.pdf • Pro and Con arguments (Note: this is a ‘Custom written’ Previous Cancer Voices newsletters have included essay on the internet provided free for students): https://studycorgi.com/euthanasia-pros-and-cons/ information about voluntary assisted dying: • October 2017 (page1; page 5): Recent developments in other Australian states and https://www.cancervoices.org.au/wp- content/uploads/2017/11/NEWSLETTER_CVN- New Zealand may have a bearing on how the issue October_2017.pdf progresses in New South Wales. These include: • December 2017 (page 4): • announcement that the re-elected Queensland https://www.cancervoices.org.au/wp- Government will introduce VAD legislation in content/uploads/2017/12/NEWSLETTER_CVN- February 2021, ahead of the delivery of the final December_2017A.pdf Queensland Law Reform Commission report on the • March 2018 (page 5) matter; https://www.cancervoices.org.au/wp- • passage of the New Zealand referendum in content/uploads/2018/04/NEWSLETTER_CVN- October 2020 to commence voluntary assisted March_2018_V3.pdf dying arrangements in November 2021. • December 2019 (page 1; page 5): https://www.cancervoices.org.au/wp- Developments in Tasmania have perhaps been of most content/uploads/2019/12/NEWSLETTER_CVN- significance. On the fourth attempt in the last eleven Dec_2019-Final-.pdf years to introduce VAD legislation, the Tasmanian Parliament has approved a draft bill (the End of Life Other references: Choices Bill), presented by Mike Gaffney, an Dying With Dignity NSW website: independent MP in the Tasmanian upper house. https://dwdnsw.org.au Unanimous approval in the Legislative Council occurred in November, and a vote of 17-7 approved Go Gentle Australia website: the bill in the Legislative Assembly in December 2020. https://www.gogentleaustralia.org.au Links to arguments for and against voluntary assisted The draft legislation is now being examined by the University of Tasmania, with it then to be considered dying legislation (you may need to read through some of these items to find the relevant information): for amendment by the lower house in March 2021. If final approval is then successful, the provisions would • United Kingdom article, 2004: commence in mid-2022, which would make Tasmania https://www.ncbi.nlm.nih.gov/pmc/articles/PMC258571 the third Australian state, along with Victoria and 4/?source=post_page- Western Australia, to have voluntary assisted dying • Medical Oncology Group of Australia position statement provisions in operation. and member survey results, March 2018: Murray McLachlan Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 7
This is a series of four free short modules designed to Consumer Involvement in Research (CIR) inform and prepare consumers to be involved in cancer-related health and medical research. Once you A new group of recruits has joined our Consumer have completed the online modules, you can register Involvement in Research Program following an expression of interest at completion of their training in September with the https://www.cancercouncil.com.au/consumersresearc workshop component. The training is a collaborative h-training-expression-interest-form/ for consideration effort between Cancer Voices NSW and Cancer Council to be included in the next Cancer Council NSW half NSW. Following the training, twelve new enthusiastic day workshop on a date to be determined in 2021. members have joined Cancer Voices NSW and indicated their willingness to be involved with For the 2020 grant funding cycle, there were 82 research projects as consumer representatives. This requests from researchers and committee organisers brings the number of consumers available to be involving 133 consumers. For the 2021 funding cycle, partnered with researchers to 130. These new Cancer researchers have started to send requests for Voices members bring a wealth of experience and consumers as they prepare their funding applications. expertise and will provide great insight as they February to April is a busy period for our CIR program. contribute their perspective to research projects and Already, for the 2021 funding cycle, there have been cancer committees. 12 requests for consumers to be involved with research projects, with 17 consumers undertaking this This year, due to the restrictions placed on meetings important role. Please check your emails daily and and gatherings, the face-to-face component of the respond to any emails from Cancer Voices as soon as training was delivered online by Zoom. The workshop possible, so that matching can be undertaken within a used the Zoom interactive features, including polling, short time frame. Please let us know if you have breakout rooms and the chat bar for interactive changed your email address so we can keep your questions and answers. A lot of time was put into contact details up to date. organising this session by Stephanie Ohlback from Cancer Council NSW to ensure that the two hour I would like to thank all consumers for their session was informative and designed to facilitate willingness to undertake this vital role in cancer maximum interaction by all involved. research. This year has been particularly busy with several of our consumers taking on multiple projects Cancer Voices NSW would like to thank the Cancer to ensure that an appropriate consumer was matched Council NSW, in particular Jane Hobson and Stephanie to each request we received. Ohlback, for their hard work and dedication to ensuring the ongoing success of the CIR program. This will be my last update on the CIR program as I am stepping down from coordinating the program. I The training is in two parts – the on-line modules and would particularly like to thank Julie Marker from a face-to-face segment. If you are interested in Cancer Voices SA who has kindly supported me with becoming a consumer partner, you can access the matching requests that have come from interstate modules at https://cancercouncil.litmos.com.au/self- researchers and committees. signup/register/3064?type=2 Lee Hunt Announcement – changes within our CIR ‘Since late 2015, our CIR Program requests have been Program well managed by CVN Executive Committee member Lee Hunt. Acknowledgement and Thank You! ……… In that time, Lee has linked trained consumers with As indicated above, Lee Hunt has announced that she many projects across a diverse range of cancers and is stepping down from the CVN CIR Program. aspects related to improving prevention, diagnosis, Lee’s long standing involvement and dedication was treatment, care, survivorship, end of life and palliative acknowledged in our 15 year Special Report of the CIR care for those affected by cancer. During this time, Lee Program in our previous newsletter. has also developed a special rapport with our consumers and many of the researchers who use the 8 | Page www.cancervoices.org.au the Voice of People Affected by Cancer
Program …….. We are most grateful for the ‘safe our newsletter. Kathryn became a member of the CVN hands’ and dedication that Lee has provided to the CIR Executive Committee in 2019. Program since 2015.’ With a professional background in training and In looking back through our records, Lee has been in facilitation, Kathryn has been very generous by given this role for the second longest period behind former time to facilitate each of our annual inhouse EC member, the late Sally Hodgkinson, who amongst workshops since 2018. other roles for both Cancer Voices and the Breast Kathryn is no stranger to the research world. Like Cancer Action Group, managed both our consumer many of our consumers, Kathryn has a very strong reps requests and our research requests for some 7 commitment to and interest in research through not years. only our CIR Program but also through the Once again, we thank Lee for her valuable contribution Translational Research Network (TCRN) consumer and being the constant in this important work during advisory panel (CAP) at the University of NSW. She has this time. Lee is very passionate about research and also been a member of the Consumer Review Panels continues to be involved in a number of projects in her for Cancer Council NSW, National Breast Cancer areas of interest. Lee has been a regular contributor to Foundation and Cancer Australia where she has had our newsletter since joining Cancer Voices not only the opportunity to assess applications for cancer with her regular CIR updates but across a range of research grants. issues and concerns impacting those affected by Kathryn is already known to several of our special CIR cancer. You will continue to hear from Lee via our consumer community and is looking forward to newsletter. Lee has indicated that she has something working with you all, getting to know you and planned for our first newsletter next year. understanding your interests. New appointment - welcome to Kathryn Leaney We first profiled Kathryn back in 2017, refer Page 10 at I would like to announce that CVN EC member Kathryn https://www.cancervoices.org.au/wp- Leaney has offered to take on the co-ordination of content/uploads/2017/09/NEWSLETTER_CVN- requests for our CIR Program. Kathryn should be August2017_V1-EK1.pdf familiar to many as she has been a very active CVN member for a number of years. Elisabeth Kochman She has been a member of CVN since 2013 and in 2014 she answered a call to assist with the production of Implications of end-of-year NHMRC funding grants for research 'Not a way to live': Scientists brace for bleak Christmas as COVID cash crunch hits research This item from the Sydney Morning Herald, 3 December, is in regard to the ramifications of the end-of-year funding grants by the NHMRC (with the success rate of applications down to 10%, the lowest success rate on record) and wider impacts of COVID-19 on Australian medical research. Link: https://www.smh.com.au/national/not-a-way-to-live-scientists-brace-for-bleak-christmas-as-covid-cash- crunch-hits-research-20201203-p56kda.html To our new members A warm welcome to those who have joined Cancer Voices in recent months. Please let us know if you would like to be more involved or have issues that you would like to raise and or discuss. To all our members and consumer representatives We love hearing from and engaging with our members and readers. If you are in a representative role please consider providing an update. All emails to info@cancervoices.org.au Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 9
Consumer Involvement in Research Program Review update Work on the external review of Cancer Voices’ A major component of the Review was the survey of Consumer Involvement in Research (CIR) Program has consumers and researchers, including the re- taken place during the past four months. The aims of administration of the survey used in the previous, the Review (as detailed in the Cancer Voices internal review of CIR in 2016. Your survey responses Newsletter September/October 2020 issue, pages 9- have provided a rich source of information that have 11 https://www.cancervoices.org.au/wp- helped inform the Review. content/uploads/2020/10/NEWSLETTER_CVN-SEPT- The Executive Committee thanks all those who took OCT2020_FINAL.pdf ) were to provide: the time to respond to the survey and to provide your • an analysis of the Program’s current operation, views on how CIR (and more broadly, Cancer Voices) identifying it strengths and weaknesses, and operates and where it might head in the future. opportunities and threats; A comparison of the 2016 and 2020 survey results • recommendations for the consideration of the indicates a more fully functioning Program (and Executive Committee that will result in the optimal organisation) that is valued by researchers and operation of the Program as currently structured; consumers while having significant potential to be developed and more closely managed so that it builds • recommendations for the consideration of the on its past successes while expanding its operation in Executive Committee that could result in the the cancer, and potentially, the broader health consolidation and future expansion of the Program research sector. into areas not currently identified. The Executive Committee will receive a briefing The report from the Review will provide: session on the results and implications in January 2021 • a framework on which to reconfigure CIR to from Graeme Gherashe, the external consultant who address a changed and changing operational conducted the Review, and will consider the findings environment; as the sole focus of its Think Tank Workshop that will follow the Cancer Voices Annual General Meeting on • the opportunity to strengthen its current 19 February 2021. Graeme Gherashe will facilitate the management approach; workshop. • the opportunity to improve its capacity to be pre- Murray McLachlan eminent in what is an increasingly competitive environment for researchers to identify and engage research consumers. Do you have a big, innovative idea about how to improve and transform the health system and health outcomes in Australia or New Zealand? The Consumers Health Forum of Australia wants to know! They are inviting you to send in videos of your ideas for innovation in health, to be part of the Big Ideas Forum at their Australian and New Zealand Shifting Gears Summit in March 2021. Found out more about how to be part of Shifting Gears and make a Big Ideas video! 10 | Page www.cancervoices.org.au the Voice of People Affected by Cancer
The Voices Being Heard Meetings • CHF Self-care and self-management: a follow up to the • CVN / HCNSW, 14 October, 25 November, 9 December blueprint report, 28 October • HCNSW AGM, via Zoom, 16 October https://www.youtube.com/watch?v=XzVz_5dk-Js • Sydney Cancer Conference planning committee, 2 Nov • Sydney Catalyst Early & Post Graduate Researcher Forum, 30 • CINSW, COP briefings, 4 November, 11 December October • NSW Cancer Plan Governance Committee, 16 November • VCCC Cancer & COVID-19 in Victoria: Challenges & • CVN CIR Review, Steering Committee, 20 November, 3 Dec perspectives from the USA, 6 November • CVN EC, 24 November, 1 December • HCRA Symposium, 6 November. Recording link • CHF 2020 AGM, 23 November • RCA / NOA Vision 20-30 launch, 9 November • CCA supporting people during COVID-19, 25 November • COSA ASM, 11-13 November • Genetic Alliance Australia AGM, 26 November • Funeral service Chris Christensen, CVSA, 12 November • RANZCR, FRO Roundtable, 27 November • RANZCR Interventional Radiology Committee planning • Targeting Cancer, 4 December workshop, 17 November • Cardio oncology special interest group, 4 December • SAHMRI & Bragg Centre Proton Therapy & Research webinars, • CCNSW AGM, 8 December explores How can we improve the radiation experience for • HCNSW, 1 December, 9 December, 15 December patients and families 18 November, 25 November • HCNSW Board, 11 December https://m.youtube.com/channel/UCuiDs88eLL358mWJ_9HhCdg • RANZCR, FRO Council, 11 December • CHF Members Policy Forum, 23 November • CINSW, 15 December • CINSW Cancer Conversations: Cardio-Oncology, 24 November • UTS, various & ongoing • George Institute, JoinUs webinar, 26 November • PC4 Forum, 7 December Forums / Webinars / Events • CCNSW, Advocacy webinar, 10 December • Garvan webinar, Our 2020 scientific discoveries, 16 December • Australian Health Research Alliance Co-design Workshop, 29 September Submissions and invitations to comment and endorse • CHF, Australian Federal Budget briefing analysis, 9 October, https://www.youtube.com/watch?v=G4YBW_YeHDk Submissions • HCNSW/Sydney Health Partners CIR workshop, 13 October Establishment of mobile health monitoring service for bushfire • RCA/NOA Genomics Blueprint Report launch, 15 October, see fighters to further details, P19 • Minister for Health, Brad Hazzard, 11 November • George Institute: George talks on Food, COVID, Sensible Policy, • Commissioner Rural Fire services, 11 November 16 October • Commissioner Resilience NSW, 11 November For comment • Garvan Breast Cancer Symposium, A virtual tour of the lab, 23 • CA, Report on the Lung Cancer Screening Enquiry, October, https://www.youtube.com/watch?v=UR3X0sJtqCY&feature=y December Endorsement outu.be • NSW Cancer Plan co design workshop, 26 October • The Cancer Survivorship Care Consensus Statement, November • CCA, 2020 Cancer Consumer Forum, 27 October From Consumers Health Forum Australia (CHF): A summary of recent webinars replays for healthcare consumers • Self-care… patient power - a webinar will be on self-care and self-management and follow-up on the Mitchell Institute’s national blueprint for support and development of self-care released on 7 Oct 2020 .... watch replay • Patients, partners in health – significant trends for change, with increasing acceptance of patients being engaged as partners with clinicians. What does this mean for Australia’s approach? .... watch replay • Social prescribing, the referral of patients to non-medical activities to supplement conventional care - webinar on successful trials in Canada and Australia .... watch replay • A celebration of the learnings from the National Collaborative Pairs program .... watch replay • Script change - electronic prescribing and the consumer ... watch replay • Not Going Viral - consideration of future-focused health policy post COVID with Deputy Chief Medical Officers Dr Nic Coatsworth and Prof Michael Kidd ..... watch replay • Telehealth in Primary Care ..... watch replay • The National Health Information Strategy - what is it, and does it mean for consumers ...... watch replay Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 11
Recently updated information resources at Cancer Council (CC) All content in these publications has been reviewed and updated by multidisciplinary panels of experts. Fertility and Cancer – this booklet looks at the impact of cancer treatment on fertility Understanding Cancer in the Liver – this booklet is for people affected by liver cancer Mouth Health and Cancer – this guide provides information about how cancer treatments can affect the mouth area Understanding Myeloma – this booklet is for people affected with myeloma, a type of blood cancer Caring for Someone with Cancer – this booklet is for people caring for someone with cancer Understanding Lung Cancer – this booklet is for people affected by lung cancer Understanding Vulvar and Vaginal Cancers – this booklet is for people affected by vulvar and vaginal cancers Understanding Kidney Cancer – this booklet is for people affected by kidney cancer. Recently recorded events by Cancer Council that may be of interest: 13 11 20 Day Live streaming recording Cancer Council Information and Support Line staff members across Australia along with breast cancer survivor, Laraine, joined the live stream to discuss all things cancer and answer questions. You can view the recording here. Webinar: “What’s so different about cancer survivorship when you’re a young adult?” Young adult survivors (25-40 years) continue to experience complex issues beyond the immediate treatment phase. Workplace conversations, body image, gaps in peer support and long term effects from the treatment can make it difficult to fully articulate how treatment has impacted your life. The webinar recording is available here. Garvan Institute of Medical Research Consumer Engagement in Health Care Policy, Research and Services: Methods and Effects. Watch a range of videos from previous Garvan seminars and learn about the latest trends and This review assesses the effects of consumer advances in medical research at engagement in health care policy, research and https://www.garvan.org.au/tours-events/public- services. Access in full on Research Square. seminars/previous-seminars From the Pacer Network ‘Due to COVID-19, we were unable to run our research workshops this year. We did however continue our monthly webinar series and would like to say a special thanks to all the presenters. We discussed a range of interesting topics related to patient-centred research, including consumer engagement in evidence synthesis, eliciting patient perspectives with nominal group technique, and developing core outcomes for COVID-19. To access the full program and webinar recordings, click here. ‘ The PACER Network was established in 2018 and is a joint initiative of The University of Sydney, and the Kids Research at The Children’s Hospital at Westmead, Westmead Hospital, and the Westmead Institute for Medical Research. 12 | Page www.cancervoices.org.au the Voice of People Affected by Cancer
SPECIAL REPORT – GENETIC TESTING On 17 November, NSW Treasurer, Dominic Perrottet, Imagine that the genome is a book. There are twenty-three announced that “patients with blood cancers and some rare chapters, called CHROMOSOMES (called either X or Y). Each genetic diseases will benefit from a $49.6 million funding chapter contains several thousand stories, called GENES. boost for innovative new cell and gene therapies in the 2020- Each story is made up of paragraphs, called EXONS, which 21 NSW Budget. This is an exciting time in medicine. There is are interrupted by advertisements called INTRONS. Each a wave of cell and gene therapies now available for rare, paragraph is made up of words, called CODONS. previously untreatable, often fatal conditions.” Each word is written in letters called BASES using only But what does this all mean? What is gene therapy and how four letters: A, C, G and T (which stand for adenine, can it help people with rare cancers? This Special Report looks cytosine, guanine and thymine). The human genome at genetic/genomic testing and how it could impact on a contains more than three billion DNA base pairs and all of person’s health outcomes, and on the role of the genetic the genetic information needed to make us. counsellor. There are more than one billion words in the book, which What is Gene Therapy? makes it longer than 800 Bibles. Gene therapy is an experimental technique that involves If you were to read the genome out at the rate of one altering the genes inside a person’s cells in an effort to word per second for eight hours a day, it would take you a treat or stop disease. By replacing a faulty gene or adding century. If you wrote out the human genome, one letter a new one, gene therapy can be used to correct defective per millimetre, your text would be as long as the River genes in order to cure or help fight disease instead of using Danube. This is a gigantic document, an immense book, a drugs or surgery. recipe of extravagant length, and it all fits inside the microscopic nucleus of a tiny cell that fits easily upon the To better understand how this works, we must first head of a pin. understand the gene and how genomic testing can be used to identify the faulty genes in the first place. Variations Genetics or Genomics? Almost everything in the body, from hair to hormones, is either made of proteins or made by them. Proteins are The terms ‘genetics’ and ‘genomics’ are often used molecules that provide structure and function to cells. interchangeably, but they are different. Genetic testing Proteins are also responsible for switching genes on and usually looks at just a single gene, while a genomic off. Different genes are switched on or off in different parts sequencing test can capture information from the whole of the body and at different times in the development and genome (all of a person’s DNA), part of the genome that growth of a living organism. Malfunction of these proteins codes for proteins (called the exome) or a panel of genes can have wide-ranging effects in the body. related to a particular condition, thus allowing scientists to analyse all the genes relevant to a particular condition in When genes are replicated, mistakes are sometimes made. the one test. A letter (A, C, G, T) is occasionally missed out or the wrong letter inserted. Some letter changes look different but Genomics is the study of all of a person's genes (the don’t change the meaning - therefore, the gene still works. genome), including interactions of those genes with each Other letter changes look different and do change the other and with the person's environment. meaning – and this means that the gene doesn’t work as it What is a genome? should. Other changes look different but the meaning of the changes is not known. Therefore, what the effect on All living organisms, from bacteria to elephants, have the gene might be is not known. genomes. A genome contains the instructions – the genetic information - needed to make a living organism. These Variation in a person’s genomes can reveal whether they instructions are written in the DNA (deoxyribonucleic acid) might develop a genetic condition, or that they are more which is in turn packaged into structures called susceptible to developing a certain condition. Also, a chromosomes. Every cell in your body contains the same variation in a person’s genome means they may respond DNA that is unique to you and it is replicated every time a differently to a treatment for the same condition. This is cell reproduces such as when your hair grows or your skin where personalised treatment comes in. heals after a cut. The BRCA1 and BRCA 2 genes are probably the most well- Matt Ridley puts it very succinctly in his book: “Genome: the known gene variations. Having a variation in one or either of autobiography of a species in 23 chapters”. these genes can increase the risk of developing breast or ovarian cancer. Women with a variant in the BRCA1 or BRCA2 genes have a significantly increased chance of developing breast and ovarian cancer during their lifetime. Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 13
Some women with such a mutation may decide to undergo Pre-test counselling and consent: Genomic testing can surgery to reduce the risk of developing the condition later in generate uncertain or unanticipated information and can life. have implications for other family members. The individual must give their informed consent to the test and for this Mapping the Human Genome they need a level of health/genetic literacy to understand So how are variations identified? the test and its implications. Not all tests result in a clear unambiguous outcome. Pre-test counselling and consent is The entire human genome was first mapped and sequenced designed to ensure that patients understand what is being over a period of 13 years from 1990 to 2003. The Human done and why and that they have realistic expectations Genome Project (HGP) was a ground-breaking international about the testing outcomes. initiative, considered to be one of the most ambitious scientific projects undertaken in the twentieth century. The Test: A DNA sample, usually extracted from a blood sample, is needed for the genomic sequencing test. The The Human Genome Project was a composite derived from sample is sent to a pathology laboratory where the DNA analysing blood from around 100 different individuals and can be ‘extracted’. There are several types of tests and the was designed to generate a resource that could be used for most appropriate one for each individual will depend on a broad range of biomedical studies. One such use is to look the type of genetic variant the doctors are trying to find. for the genetic variations that increase risk of specific The results are analysed and presented in a way that can diseases, such as cancer, or to look for the type of genetic be explained to the patient by a genetic counsellor. mutations frequently seen in cancerous cells. Post-test counselling: It is important for patients to Inheritance and genetic conditions understand all aspects of the test results, including In genomics, inheritance is the passing of genetic uninformative or uncertain results, and potential information from parents to their children. This is why implications for clinical management or for other family members of the same family share similar characteristics members. The process of post-test counselling after including eye and hair colour, cheek dimples and earlobe genomic testing will vary greatly by patient and by the type type. Individuals inherit their genomes from their parents – of test results. Patient responses to, understanding of, and 50% from their mother and 50% from their father. Genetic interpretation of results will naturally be influenced by variants that cause health conditions can be passed on from their particular situation. parents to their children. What role does a Genetic Counsellor play? Cancer is a disease of the genome. It arises when genes While a clinician may recommend that a person undertakes involved in promoting or suppressing cell growth sustain a genetic test to determine the risk of disease or to identify mutations that disturb the normal stop and go signals. the genetic variants which may be causing their condition, Sequencing the human genome has helped researchers to they are not always trained to provide the necessary identify important genes and genetic sequences, to better explanations and support to the individual. understand their role in disease. Since 2003, many gene variations have been identified that increase the risk of Genomic information can have medical, psychological, family developing a range of conditions, such as cancer, diabetes, and reproductive implications. Sometimes the results are clear and cardiovascular disease. but often the results are ambiguous and this can cause additional stress. For many people, the uncertainty around a How, then, does a person learn if they have a variation and diagnosis may result in anxiety, confusion and often of its implications for themselves and their family members? misunderstanding. It is not something that they can or should The Genetic Testing Process deal with alone. This is where the genetic counsellor comes in. There are several steps involved in having a person’s The genetic counsellor helps individuals, couples and genome sequenced. Two of these steps involve genetic families understand genetic medical conditions and adapt counselling. to the impact of information provided by genetic and genomic testing. They can explain what options may be Identify the Individual: The first step is to identify the available if a clear diagnosis in not made; including further person for whom a genomic test is appropriate. This could testing in future or being linked with a research project. be following their own diagnosis of cancer, particularly if They can interpret family and medical histories to assess that person has a family history of the same or similar type the likelihood of an inherited cause and the chance of of cancer; or it could be a member of that person’s family other family members having the same condition and who is being tested for the same gene variation. Testing is support the person to make informed choices about what expensive and time-consuming and results can potentially to do next. have far reaching consequences for the individual and their family members. It is not something that is taken on lightly. Genetic counsellors do not make decisions for you – their role is to provide information, answer your questions and 14 | Page www.cancervoices.org.au the Voice of People Affected by Cancer
support you to reach decisions which are right for you and Further Reading your family. The human genome project Summary https://www.ted.com/talks/riccardo_sabatini_how_to_read_the_ genome_and_build_a_human_being While genetics remains just one of several factors that contribute to people's risk of developing most common Melbourne Genomics Health Alliance https://www.cancer.org.au/cancer-information/causes-and- diseases, other factors such as diet, lifestyle, and prevention/family-history-and-cancer/genetic-testing environmental exposures also come into play. A deeper understanding of genetics can lead to more personalised NHMRC Direct-to-Consumer Genetic Testing - A Statement from treatment for people who have an identified genetic the National Health and Medical Research Council (NHMRC) variation and a better understanding of how all the various NHS UK Genomics Education Programme Hereditary breast elements work together to affect the human body in both and ovarian cancer www.hee.nhs.uk health and disease. Kathryn Leaney Cancer Institute NSW (CINSW) Update Education has developed a rapid learning module: Hypofractionated radiation therapy. Cancer Conversations online webinars The module helps participants understand what Connecting clinical stakeholders face to face has been hypofractionated radiation therapy involves, why it is a real challenge in 2020 due to COVID-19. The Patient a safe and effective treatment option for early-breast Experience Team have started hosting Cancer cancer and some localised prostate cancers, and the Conversations, an online series of webinars held after benefits for people with cancer. hours for health professionals to share knowledge, learnings and opinions on the most current The online module covers: information relevant to cancer treatment and care. • the differences between conventional and In the November Cancer Conversations, Prof Tom hypofractionated radiation therapy Marwick, Director of the Baker Heart and Diabetes • the clinical case for hypofractionation Institute, A/Prof Eng-Siew Koh, Senior Staff Specialist in radiation oncology and Professor Bogda Koczwara, • how it is used to treat breast and prostate cancers Senior Staff Specialist in medical oncology shared their Participants have described the course as “informative insights on early detection of cancer cardiotoxicity and very easy to understand”, “quick and to the point” including current evidence and ways to reduce the and “evidence based as always”. effects. Seventy two people attended the webinar and feedback on the event has been very positive. We This online course is free and takes around 15 minutes look forward to hosting several more throughout 2021 to complete. It is suitable for people looking to deepen on a variety of topics. For more information, please their understanding of hypofractionation radiation contact cinsw-events@health.nsw.gov.au therapy and includes some technical concepts. View the recording at https://education.eviq.org.au/rapid-learning/topic-18- https://www.cancer.nsw.gov.au/what-we- hypofractionated-radiation-therapy do/events/cancer-conversations For all the latest from Cancer Institute NSW go to https://www.cancer.nsw.gov.au/ New online learning: Hypofractionated radiation therapy Hypofractionated (“short course”) radiation therapy has an important role to play in the treatment of early-stage breast and some localised prostate cancers. To increase this understanding, eviQ Newsletter No 80 December 2020 Published by Cancer Voices NSW Inc Page | 15
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