CANFORUM 2022: What is the value of a life?

Session Time: 9:40 am

Topic: Welcome

Richard is the co-Founder and Chief Executive of Rare Cancers Australia. He is Convener and Co-chair of the National Oncology Alliance, and Deputy Chair of Omico. Richard also serves as an associate investigator on several research projects and is a spokesperson for cancer patient advocacy issues in both Australia and the Asia Pacific region.  

Session Time: 9:50 am

Topic: Counting the Cost Report - the true value of investing in cancer treatment

Peter is the CEO of Canteen, an Australian not-for-profit organisation that provides free and tailored support to young people aged 12 - 25 years, who are impacted by cancer. Peter has been with Canteen since 2012.

Peter is continually struck by the sense of possibility and vulnerability that can be present during adolescence and early adulthood. This has inspired him to work with young people for over 30 years across across homelessness, mental health, community health, and now cancer. He was Deputy CEO at headspace - national youth mental health foundation and then, as a Director at Australian Healthcare Associates, he undertook evaluations of federal and state initiatives across organ and tissue donation, Aboriginal and Torres Strait Islander health, mental health, disaster recovery and drug and alcohol.

Session Time: 10:00 am

Topic: Sean's story

Sean joined the organisation (Canteen) in 2008 at age 14 after his mother's terminal cancer diagnosis. She died a year later, leaving him and his two younger brothers as wards of the state.

He’s spent the past 14 years helping many young people in similar situations cope with a cancer diagnosis in their family and been a staunch advocate for young people’s needs. His input has helped shape decisions on a range of vital strategies, including clinical trials, youth cancer services, community-based support, and an online support community and counselling service.

Sean was named the ACT Young Australian of the Year in November 2021 in recognition of his incredible contribution to Canteen as a young leader, including 6 years as a board director.

Sean has a keen interest in public policy, economics and corporate governance. In 2019, he began his public service career in Canberra with the Department of Jobs and Small Business and Attorney-General’s Department and is currently a policy advisor with the Australian Institute of Company Directors.

Opportunities for SROI being incorporated - discussion

Session Time: 10:15 am

Speaker

Session Time: 10:30 am

Topic: How we value life

Christopher Gyngell is a Senior Research Fellow in Biomedical Ethics at the Murdoch Children’s Research Institute and the University of Melbourne. His research interests lie primarily in the ethical implications of biotechnologies and the philosophy of health and disease. He was previously a Marie Sklodowska-Curie Fellow at the University of Oxford.

Session Time: 11:30 am

Topic: Sarah's story

Mother of one, Sarah, was diagnosed with Gastro Intestinal Stromal Tumors (GIST) at 18 years old. She has lived with the rare cancer for her entire adult life. Of the 26 years of her disease, she has only been eligible for PBS approved treatment for six years. She has otherwise been dependant on compassionate access programs or clinical trials to buy more time with her family.

Sarah’s advocacy includes community awareness of clinical trials and medical research, individual patient support for GIST patients and working with charitable groups, lobbying groups and to the government to get PBS funding for treatments for all GIST patients in Australia. Due to Sarah’s advocacy, patients have been able to access to further treatments that have kept them alive and given more time with loved ones.

Session Time: 11:40 am

Topic: The challenges of measuring value

Andrew is the chair of the Pharmaceutical Benefits Advisory Committee for the Australian Department of Health. He is co-Director of the Menzies Centre for Health Policy and Economics, University of Sydney and co-leads the Australian Prevention Partnership Centre. He has specialist qualifications in public health and clinical medicine, and a PhD in epidemiology. His research interests concern how evidence can better inform decision making in clinical medicine, public health, and health service policy and planning especially in chronic disease prevention and management.

Session Time: 12:05 pm

Topic: Valuing working with patients in HTA 

Ann has more than 20 years’ experience developing policy and practice in patient involvement in health technology assessment (HTA), beginning with directing communication and public involvement when HTA was first established in Scotland. She’s co-edited a book on patient involvement in HTA, lead science communication and engagement in government departments and research institutions, established and run an HCO with people with CFS/ME, and co-chaired HTAi’s International Scientific Program Committee (2022). Ann recently accepted an invitation to serve as a patient representative on the Reference Committee for the Australian Government’s HTA Policy and Methods Review.

Panellists

Panel Start Time: 12:30pm

Session Time: 2:00 pm

Topic: Angus' story

Angus was diagnosed with Hodgkin’s lymphoma at the age of 10. After initial treatment with chemotherapy was successful, the cancer returned two years later. Thanks to generous donations from the public, Angus’s family had enough money to pay for treatment that was not available through the PBS for relapsed Hodgkin’s Lymphoma patients.

Now 19 years old and studying at university, Angus wants to give back to the community that supported him all those years ago. He hopes that by sharing his experience, he can raise awareness of the challenges rare cancer patients face and provide hope for other young people walking a similar path.

Session Time: 2:15 am

Topic: Healthy population, healthy economy

Michael Brennan is Chair of the Productivity Commission.

Previously Michael was Deputy Secretary, Fiscal Group, in the Federal Treasury with responsibility for budget policy, retirement incomes, Commonwealth-State relations, social policy and infrastructure financing.

Before that he was Deputy Secretary, Economic in the Victorian Department of Treasury and Finance. Michael has worked as an Associate Director in the economics and policy practice at PricewaterhouseCoopers, and as a senior adviser to Treasurers and Ministers for Finance at the State and Federal level.

Michael holds a Bachelor of Economics (Hons) from the ANU.

Michael is currently working on the Productivity Review inquiry, Closing the Gap Review and National School Reform Agreement studies.

In addition to his role of Chair, Michael also worked on the Expenditure on Children in the Northern Territory study.

Session Time: 2:30 pm

Topic: Value-based healthcare

Professor Wainer is the Deputy Secretary for Public Health in the Victorian Government Department of Health. 

She has previously held roles as the Director of Clinical Governance at Bupa Australia and New Zealand, Chair of the Board of Dental Health Services Victoria and a Director on the Board of the Victorian Responsible Gambling Foundation. Her passion and expertise in public health has driven formal and informal collaborations with the ICHOM, Harvard Business School and The University of Texas at Austin, Dell Medical School in value-based health care across multiple organisations. Zoe also has a continued advocacy focus on the importance of sex differences across health from basic research to health systems implications.

Zoe holds a Bachelor of Medicine, Bachelor of Surgery from Flinders University, and has a clinical background in cardiothoracic surgery and thoracic surgical oncology. She has a PhD and a Master of Public Health from The University of Melbourne, is a fellow of the Australasian College of Health Service Management, Associate Fellow of the Royal Australasian College of Medical Administrators and is a graduate of the Australian Institute of Company Directors.

Panellists

Panel Start Time: 2:55 pm

Speaker

Session Time: 3:25 pm

Topic: Closing Remarks

Christine is a health sociologist who is passionate about patient education and empowerment. She currently oversees the delivery of patient support programs and resource development at RCA.