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Legal and governance framework

We abide by legislation governing what data is collected, how it is collected and stored, and how people can access our data.

Legislation applicable to the VCR

We abide by legislation governing:

  1. what data is collected
  2. how it is collected and stored
  3. how people with cancer can access the data we capture on them
  4. how data is released. 

We are governed by the following Victorian legislation:

  • The Improving Cancer Outcomes Act 2014  
    • This legislation provides instruction on the data to be collected by us. Collection of this information does not require patient consent. This Act also regulates the circumstances in which data may use and disclose health information. We may release information:
      • with the consent of the individual, or if the individual is deceased-the individual’s legal representative (for example, the next of kin)
      • if the information is used or disclosed in accordance with established Health Privacy Principles set out in the Health Records Act 2001.
  • The Improving Cancer Outcomes (Diagnosis reporting) Regulations 2015
    • This legislation outlines who is required to report and what information they must provide to us.  The Act states that data may be used for medical research or the administration of cancer related public health programs.
  • The Health Records Act 2001
    • This legislation protects the privacy of individuals' health information. It regulates the collection and handling of health information by us. The Act gives individuals a legally enforceable right of access to the information held on them by the private and public sector.
  • The Freedom of Information Act 1982 (Vic)
    • This legislation is applicable to people requesting information:
      • without the consent of a person
      • if the request is not specific to a particular individual, or
      • if the request is for an alternate purpose to those set out in section 15 of the Improving Cancer Outcomes Act 2014 .    
    • For advice on whether a request for information should be processed under the Freedom of Information Act, please contact the Department of Health and Human Services via email on foi@dhhs.gov.au.

We are governed by the following Commonwealth legislation:

  • The Privacy Act 1988 covers the handling of the personal health identifiers (Medicare number) captured by us.

Governance framework

We are assisted in defining our strategic direction by a Strategic Advisory Group (SAG). Current members of the SAG are listed below and operate in accordance with the SAG - terms of reference (PDF) .

Current members of the SAG

Prof Sanchia Aranda

Prof Sanchia Aranda
Current Chair, VCR SAG

A nurse by background, Sanchia has worked in cancer control for over 40 years, most recently as CEO of Cancer Council Australia (2015-2020). She has held roles in healthcare, government, and tertiary education and across the spectrum from prevention, through treatment and palliative care. Over the past 12 years Sanchia has worked in roles that use cancer data and established the Cancer Institute NSW Reporting for Better Cancer Outcomes program. As CEO of Cancer Council Australia (2015-2020) Sanchia advocated for improved collection of and access to cancer data that would support system improvements.

For the last 28 years Sanchia has worked in international cancer control, serving on the boards of the International Society of Nurses in Cancer Care (President 2006-2010) and the Union for International Cancer Control (President 2016-2018). She is the inaugural Board Chair for the City Cancer Challenge Foundation (2019 – current)

Sanchia holds a part-time appointment as a Professor of Health Services Research at The University of Melbourne and Peter MacCallum Cancer Centre.


Alison Button-Sloan

Alison Button-Sloan

Alison is a committed patient and research advocate and works in partnership with other consumers, health professionals, cancer organisations and researchers in collaborative relationships where the focus is always on improving outcomes for patients and their families.

She has co-authored journal articles with high impact clinicians and is an experienced associate investigator on studies and clinical trials. Recently as a first for consumers in research, Alison was appointed chief investigator for a consumer-led research study application to the Medical Research Future Fund.


Prof Sue Evans

 Prof Sue Evans

Prof Evans is an epidemiologist and health services researcher. She has an undergraduate degree in nursing and post-graduate qualifications in intensive care nursing, infection control, epidemiology and statistics. Her PhD focused on reporting of adverse events in hospitals.  In 2009, joined the Monash University School of Public Health and Preventive Medicine and the led development of the Prostate Cancer Outcomes Registry-Victoria, which expanded over the following years to become the first national cancer clinical quality registry. In 2014 she was appointed as a Lead Chief Investigator on global prostate cancer registry and Head of the Data Coordination Centre; collecting, analysing and reporting on the quality of prostate cancer care across 12 countries. In 2020, Professor Evans was appointed Director of the Victorian Cancer Registry (VCR).


Todd harper

Todd Harper

For three decades, Todd Harper has led organisations dedicated to global public health, including Cancer Council Victoria, Quit Victoria and VicHealth. Todd is a Board member and Past President of the NCD Alliance based in Geneva. 

Since 2011, as Cancer Council Victoria’s Chief Executive Officer, Todd has led the organisation’s important work in cancer research, prevention, support and advocacy. During this time Cancer Council has led research initiatives in tobacco plain packaging, screening campaigns, obesity prevention, been at the forefront of bans on solariums and campaigns on junk food, alcohol and smoking. 

Todd has a bachelor’s degree in Economics, a Postgraduate Diploma in Health Promotion, a Master’s Degree in Health Economics, and an Honorary Doctorate by Deakin University for ‘outstanding contributions and commitment to public health and for willingness to be innovative and brave in advocating for public health’. 

Todd was appointed as a Member of the Order of Australia in June 2022 for significant service to cancer support programs and to medical governance. 


Dr Nikki McCaffrey

Dr Nikki McCaffrey

Dr Nikki McCaffrey is an accomplished health economist specialising in the economics of cancer and palliative care with over 20 years’ experience in HTA, health economics and economic evaluation. She has attracted substantial research funding worth more than $12M and has published over 70 articles, editorials, commentaries, reports, book chapters and peer-reviewed publications.

Since 2017, Dr McCaffrey has headed up the Deakin Health Economics Cancer Stream, leading a team of researchers informing policymakers about the value for money and equity impacts of approaches to reduce cancer burden and improve the quality of life of people affected by cancer. She also leads the Economics of Cancer Collaboration with Cancer Council Victoria (CCV) to prioritise research to improve care for people affected by cancer. In 2020, Dr McCaffrey was awarded a four-year Victorian Cancer Agency Mid-Career Researcher Fellowship to deliver much needed evidence on the value for money of different prevention, detection and palliative care interventions. Dr McCaffrey also leads a successful NHMRC Partnership Project grant application ($1.3M, 2021-2024) in partnership with CCV, the Victorian Department of Health, Breast Cancer Network Australia, the Prostate Cancer Foundation of Australia and Cancer Council Australia, to define the social return on investment of telephone cancer information and support services.


Prof David Roder

Prof David Roder 

Since 2011 David Roder has been Cancer Council SA’s Beat Cancer Project Research Chair of Cancer Epidemiology and Population Health at the University South Australia. He also works under contract with Cancer Australia, Cancer Institute NSW, and Canteen.

He presently chairs AIHW’s Cancer Monitoring Advisory Committee, the NSW Population & Health Services Research Ethics Committee, and the Canteen Youth Cancer Service Data Advisory Panel. He sits on a range of other advisory, data set specification, accreditation and redevelopment committees.

He has authored over 400 peer-reviewed research publications and is active in research both as a researcher and research reviewer for numerous international journals and research funding bodies and has reviewed research units in SA, WA, NSW, Qld, Victoria, Tasmania and nationally.

David’s research interests are broad, but with a focus on cancer, health-services evaluation, safety & quality monitoring, data-infrastructure development, and with an additional emphasis on data linkage. He is interested in, and is optimising data use through data linkage within legal and ethical constraints.


Prof Marion Saville

Prof Marion Saville

Professor Marion Saville has been Executive Director of the Australian Centre for the Prevention of Cervical Cancer (ACPCC) for over 20 years, where she has led the laboratory, population health and digital health teams focussing on the control of cancer and infectious diseases through the delivery of laboratory and registry services, particularly focussing on cervical cancer prevention.

Marion has served on cervical screening advisory committees in Australia, New Zealand and Ontario. She currently chairs the working group to review Australia’s Guidelines for the management of screen-detected abnormalities in the National Cervical Screening Program.


Prof Alexander Heriot

 Prof Alexander Heriot 

Professor Alexander Heriot is a Consultant Colorectal Surgeon and is the Director of Cancer Surgery at Peter MacCallum Cancer Centre in Melbourne and Director of the Lower GI Tumour stream at the Victorian Comprehensive Cancer Centre. He qualified from Cambridge University and completed general surgery training in the UK. He has undertaken colorectal fellowships at St Vincent’s Hospital, Melbourne, St Mark’s Hospital, London, and the Cleveland Clinic, Ohio. He completed a research doctorate at the University of London on rectal cancer and an MBA at Melbourne Business School.

He has a clinical focus on lower gastrointestinal oncology and has developed the Pelvic Exenteration service and the Peritoneal disease service at Peter Mac. He also has a focus on minimally invasive surgery for colorectal cancer with a particular interest in the development, application, and teaching of robotic colorectal surgery. He runs a robotic colorectal surgical program across Peter MacCallum and Epworth Hospitals.

He runs a translational research program on lower gastrointestinal oncology with a focus on personalised therapy.

Professor Heriot is a Clinical Professorial Fellow at the University of Melbourne and was awarded the John Mitchell Crouch fellowship by RACS for 2016. He was previously Chairman of the Research Support Committee for the Colorectal Surgical Society of Australia and New Zealand (CSSANZ) and is Chairman of the Australasian Training Board in Colorectal Surgery (TBCRS). He is Chairman of the Binational Colorectal Cancer Outcome Registry.

He has published over 350 peer reviewed papers, multiple book chapters and 1 book. He is on the editorial advisory board for Disease of the Colon and Rectum, Annals of Surgical Oncology, and Colorectal Cancer. He runs a translational  research program focusing on lower gastrointestinal oncology and has raised over $10 million in grants and is currently/has supervised 32 surgeons undertaking higher degrees.


Assoc. Prof. Daniel Buchanan

 Assoc. Prof. Daniel Buchanan 

A/Prof Dan Buchanan received his PhD in Molecular Genetics from the University of Queensland in 2010.  He was recruited to Melbourne in 2014 under the University of Melbourne Research at Melbourne Accelerator Program (R@MAP) scheme.  He is Head of the Colorectal Oncogenomics Group in the University of Melbourne Centre for Cancer Research within the Victorian Comprehensive Cancer Centre.  He has just completed a NHMRC R.D. Wright Biomedical Career Development Fellowship (Level 1; 2017-2020) and was recently awarded a NHMRC Emerging Leadership Level 2 Investigator Fellowship (2021-2025) and the prestigious Dame Kate Campbell Fellowship 2021-2025 (Dean’s Research Excellence award).  He holds an honorary appointment within the Genomic Medicine and Familial Cancer Centre at the Royal Melbourne Hospital, where he contributes to the multidisciplinary approach to the diagnosis and risk management of hereditary cancer and colonic polyposis.  He is a member of eviQ Cancer Genetics Reference Committee tasked with providing national guidelines for the testing and management of hereditary cancer syndromes and he recently co-led the revision of the testing and risk management guidelines for i) Serrated Polyposis Syndrome, ii)  POLE and  POLD1 genes and iii) Gastrointestinal polyposis and colorectal cancer - panel testing. 

He is an author of the “  AXIN2-associated polyposis” and “  MBD4-deficiency associated multi-tumour predisposition syndrome” chapters of the World Health Organisation Classification of Tumours-Genetic Tumour Syndromes ("WHO Blue Books").  He is a member of the U24 funded InSiGHT-ClinGen CRC-Polyposis Variant Curation Expert Panel (VCEP) and co-chair of the POLE/POLD1 working group. 

He leads a multi-disciplinary research group investigating the application of (epi)genomics and molecular pathology for the precision prevention of colorectal cancer.  He has been awarded competitive salary and project grant funding of  >$31M, including >$9.5M as the Lead/Principal/Chief Investigator A. He has >250 peer-reviewed publications on the aetiology of colorectal and endometrial cancer and the characterisation and risk management of hereditary cancer and polyposis syndromes.  He is the PI of the International Genetics of Colonic Polyposis Study (GCPS), the PI of the NHMRC-funded ANGELS study aimed at applying novel genomic approaches to early-onset and suspected Lynch syndrome colorectal and endometrial cancers.  He has been the Co-PI of the Australasian Colorectal Cancer Family Registry (ACCFR) since 2014 and an active member of the Colon Cancer Family Registry Cohort (CCFRC) since 2006 including managing the ACCFR’s biorepository and as lead of the Genomics and Molecular Pathology research. He is co-PI of the world’s foremost study of sebaceous skin lesions (NHMRC-funded) aimed at improving triaging approaches for the identification of Lynch syndrome.  He is an active member of the International Genetic Epidemiology of Colorectal Cancer Consortium (GECCO) leading GWAS and tumour-based colorectal cancer research. 


 

 Professor Joanne Aitken

 


Prof Andrew Wei

 A/Prof Andrew Wei       

Prof Andrew Wei (MBBS, PhD) is a clinical haeamtologist at the Peter MacCallum Cancer Centre and Royal Melbourne Hospital in Melbourne, Australia. Dr Wei is a Metcalf Family research fellow at Walter and Eliza Hall Institute of Medical Research (WEHI) and runs a laboratory in the Division of Blood Cells and Blood Cancer investigating novel agents to treat acute myeloid leukemia (AML). Dr Wei has been the AML working party chair for the Australasian Leukaemia and Lymphoma Group (ALLG) since 2009 and has been principal investigator for numerous industry and investigator-initiated clinical trials in the field of AML.


 

 Prof Roger Milne       

 


 

Louise Galloway       

 


 

 Luc te Marvelde​     

 


 

Kathryn Whitfield​    

 


A/Prof Belinda Campbell

 A/Prof Belinda Campbell

Associate Professor Belinda Campbell  MBBS, MMed (research), FRANZCR

Associate Professor Belinda Campbell is a consultant radiation oncologist and Deputy Director of Radiation Oncology at Peter MacCallum Cancer Centre.  She specialises in the radiotherapeutic management of haematological malignancies, with particular interest in cutaneous lymphomas.   Her research interests to date have focused on improving outcomes for patients with haematological malignancies, as well as screening and surveillance for treatment-related late effects in long-term survivors of malignancy. 

A/Prof Campbell completed her speciality training at Peter MacCallum Cancer Centre in 2006.  She subsequently undertook a clinical research fellowship at BC Cancer in Vancouver, Canada, where she stayed on as a consultant radiation oncologist until 2009, before returning to Melbourne.  In 2012, A/Prof Campbell was awarded a Master of Medicine (research) from the University of Melbourne for her novel work on involved-node radiotherapy for lymphoma.  In 2022, A/Prof Campbell was selected to join the prestigious Melbourne Academic Centre for Health (MACH) Future Leaders Fellowship programme in health services research.  A/Prof Campbell is presently undertaking a PhD at the University of Melbourne; her research objectives are to improve equity and access to specialist care for people diagnosed with cutaneous lymphoma within Australia.

A/Prof Campbell serves as Deputy Editor of the Journal of Medical Imaging and Radiation Oncology (JMIRO); Senior Section Editor for the International Journal of Radiation Oncology, Biology and Physics (Red Journal); and Council Member of the International Lymphoma Radiation Oncology Group (ILROG).

Recognising her contributions to research, leadership and service, A/Prof Campbell received academic promotion to Honorary Clinical Associate Professor at The University of Melbourne in 2021. 


Juliana Emerick

 Juliana Emerick      

I am Brazilian, 34 years old, nutritionist, specialist in marketing and speaker. My professional experience added to personal history with cancer, made me share everything I have learned and gave new meaning to my speeches. Since being diagnosed with breast cancer in 2016, I started volunteering in not-for-profit organizations in Brazil, and now in Australia. Being a health professional and patient, I understand a lot of things and I want to help other people to pass through cancer in a better way. I am so happy to be part of the Victorian Cancer Registry (VCR) as a Consumer Representative member. 


 

Prof John Zalcberg  

 


Previously served members

A/Prof Michael Gonzales
Dr Catherine Shang
Professor Bruce Mann
Professor Melissa Southey
Prof Jeremy Millar
Prof Anna Peeters
Alice Miller
Dr Paul Mitchell

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