Australian Child & Adolescent Cancer

PRIORITY SETTING PARTNERSHIP

Watch Video

An introduction to James Lind Alliance Priority Setting Partnerships


Project

JLA Advisor

#

Suzannah Kinsella

JLA Advisor

Suzannah Kinsella is the James Lind Alliance Adviser for the Australian Child and Adolescent Cancer Priority Setting Partnership (PSP). Her role is to chair the steering group meetings and provide guidance on the JLA methodology. Suzannah joined the JLA in 2019. Other PSPs she has advised include: Stroke, Breathlessness, Skin Cancer Surgery, Most Premature Babies, Global Burn Injury, Community Nursing and Diabetic Eye Disease. She is a social researcher, specialising in deliberative engagement.

PSP Project Team

#

Natalie Bradford

PSP Lead

Natalie Bradford is a clinician-researcher in paediatric, adolescent, and young adult cancer and Professor in children’s cancer outcomes research at Queensland University of Technology and the Cancer Council Queensland. With a Master in Public Health, and background in nursing, her program of health services research develops, implements and evaluates novel models of care, harnessing technology, across the continuum of paediatric cancer supportive care in hospitals, homes and communities.

#

Eden Robertson

Team Member

Eden Robertson is an experienced psychosocial researcher, with a special interest in supporting children with a serious illness and their families. Dr Robertson has completed a Bachelor of Psychology (Honours), a Graduate Certificate in Adolescent and Young Adult Health and Wellbeing, and a PhD in childhood cancer (2019). Driven by the need to improve the wellbeing of children and young people with a serious illness, Dr Robertson takes pride in conducting meaningful research that can be implemented to bring about positive change.

#

Alison Bowers

Team Member

Alison Bowers is an experienced paediatric nurse with an interest in paediatric palliative care and health services research. Dr Alison Bowers is a Research Fellow with Cancer and Palliative Care Outcomes Centre, School of Nursing and the Centre of Health Transformation and is based at the Centre for Children's Health Research. Alison holds an honorary position with Children's Health Queensland and is a Director of the Australian College of Children and Young People's Nurses.

#

Joanne Cummings

Team Member

Joanne Cummings is an experienced social researcher, interested in supporting children with cancer and their families. Dr Cummings has completed a PhD in Sociology and is the Senior Research and Evaluation Officer at Redkite.

#

Gayani De Silva

PSP Coordinator

Gayani De Silva is a PhD scholar affiliated with the Cancer and Palliative Care Outcomes Centre at Queensland University of Technology. Holding a medical degree (MBBS) from Sri Lanka, she has furthered her academic pursuits with a Master's degree and a Doctor of Medicine in Public Health from the Postgraduate Institute of Medicine, University of Colombo, Sri Lanka. Her research is focused on identifying evidence uncertainties associated with individuals diagnosed with cancer at any point between the ages of 0 and 18 in Australia.

Child and adolescent cancer lived experiences representatives

#

Anitta Watts

Anitta Watts is a mum of 3 boys, her middle son Cade was diagnosed with Ewing’s Sarcoma in May 2021 at the age of 14. While Cade went into remission in early 2022, his cancer returned in late 2022, unfortunately there was no standard protocol for his cancer after he relapsed and no clinical trials available to him. Cade passed away on the 03/02/2023, 2 weeks following his 16th birthday. Anita is very passionate about research into child and adolescent cancers and support for adolescence going through cancer.

#

Clarissa Schilstra

Clarissa Schilstra is a Postdoctoral Research Fellow in the Behavioural Sciences Unit, UNSW and the Kids Cancer Centre, Sydney Children's Hospital. Her research focuses on the social wellbeing of AYAs with cancer. As an AYA cancer survivor, Clarissa is a passionate consumer advocate working with international cancer organisations, including the World Health Organisation Global Initiative for Childhood Cancer.

#

Helen Stratton

Helen Stratton is a mother of two teenagers. Her interest in young peoples’ cancer and becoming an advocate for others was sparked through lived experience after her son was diagnosed with non-Hodgkin’s lymphoma at aged 10 and her daughter with an inoperable brain tumour at age 12. Both are doing quite well as they navigate their teenage years. Helen volunteers on many community management committees and volunteers her time to improve health outcomes for childhood cancer survivors through the Queensland Young and Paediatric Oncology Survivorship Focus Group.

#

Janine Cawthray

Janine Cawthray is a consumer representative of the cancer care clinic of Wide Bay Hospital and Health Service and a consumer representative for the Queensland Cancer Strategy group. Following her son’s brain cancer diagnosis in 2015 when he was 11, she became involved with advocating for families experiencing similar circumstances. Her experiences have led her to be involved with projects including assisting with establishing peer support groups for parents, organising ‘mum’ retreats, build relationships with clinicians/medical professionals and researchers. Currently supporting her 20-year-old son and working through a Batchelor of Social Work.

#

Leesa Kerr

Leesa Kerr is a mother of 3 teenage boys and a qualified lawyer. Our family has firsthand experience of the unthinkable challenges of an adolescence cancer diagnosis and treatment. Our twin son Harrison was diagnosed with Ewing Sarcoma at 11 years of age and is now in remission. I am committed to assisting all families and children navigate the stress and confusion of traumatic illness. I believe that it is our societal duty to continually improve the treatment experiences of our youngest and most vulnerable patients.

#

Lucy Jones

Lucy Jones, founder and CEO of Neuroblastoma Australia, is a seasoned and dedicated consumer advocate for advancing neuroblastoma research and treatment. Her deep personal connection to the cause, having lost her daughter Sienna to neuroblastoma, has driven her to start and lead a charity dedicated to finding better and safer treatments for neuroblastoma. To date over $3 million has been raised by the charity for research, demonstrating her commitment and ability to mobilise resources effectively.

#

Ozge Akdag

Ozge Akdag is an Emergency Nurse at the Royal Children’s Hospital. Diagnosed with ARMS at the age of 14, Ozge has ambitions to improve the care delivered to AYA cancer patients through knowledge and experience.

#

Santhosh Payal

Santosh Payal is a seasoned leader driving transformative strategies and unlocking business value through data & strategy. As a father and parent advocate, his interest lies in novel treatment options for kids with cancer.

#

Sheila Patel

Sheila Patel is a passionate consumer advocate for childhood cancer. Her determined commitment to consumer advocacy began when her child was diagnosed with high-risk neuroblastoma at the age of 3. She actively volunteers with multiple consumer-led cancer advisory groups in Australia. Professionally, Sheila is a Senior Research Fellow and an experienced Molecular Geneticist. Drawing from her personal and professional experiences, Sheila strongly advocates for the improvement of cancer care and long-term outcomes for childhood cancer survivors.

Healthcare professionals and researchers

#

Amanda Carter

Amanda Carter is a paediatric occupational therapist and allied health clinical leader for oncology services at the Queensland Children's Hospital. Amanda has worked clinically in paediatric oncology for 17 years and has been a clinical lead for the past 7 years.

#

Eliza Courtney

Eliza Courtney is a Human Genetics Society of Australia - certified Senior Genetic Counsellor specialising in cancer genetics, with appointments at the Children’s Cancer Institute and Sydney Children’s Hospital Randwick. Her primary role is providing germline and genetic counselling expertise to all aspects of the ZERO Childhood Cancer Program and is currently undertaking a PhD.

#

Claire Radford

Claire Radford is an allied health clinical leader and educator for oncology and palliative care services at Queensland Children’s Hospital. Claire has worked clinically as a speech pathologist for 18 years specialising in paediatric oncology, palliative care, and acquired brain injury rehabilitation, and has been a clinical lead/educator for the past 8 years.

#

Jason Pole

Professor Jason Pole’s program of research utilises clinical and surveillance data linked with real-world administrative data to answer health questions in several areas. Currently, Jason has research interests in the areas of digital health, health care utilisation and late effects development among childhood cancer survivors and adolescent and young adult oncology survivors.

#

Jessica Nicholson

Jessica Nicholson is a registered nurse with 20 years’ experience providing care to paediatric patients with haematology and oncology conditions throughout Queensland. She works as both the Co-Chair of the Qld Paediatric Palliative care, Haematology, Oncology Network (QPPHON) and the Statewide Educator, providing leadership and support to staff throughout Queensland and Northern New South Wales.

#

Jordana McLoone

Jordana McLoone is the Deputy Director of the Behavioural Sciences Unit, University of New South Wales, Sydney, and affiliate of Sydney Children's Hospital. Dr McLoone’s research initiatives focus on translation and sustainability, and the development of equitable, accessible, and efficient models of long-term child and adolescent survivorship care. Innovations in telehealth, digital technology and artificial intelligence to optimise efficiencies and scalability, are key areas of interest.

#

Maria Kirby

Maria Kirby is a paediatric oncologist with a practice focus on solid and brain tumour care. Maria is the ANZCHOG Medical Director, which provides leadership for the ANZCHOG clinical trials program. I have worked in the area of childhood cancer clinical trials for more than 20 years.

#

Maria McCarthy

Associate Professor Maria McCarthy is a clinician researcher at the Murdoch Children’s Research Institute and Royal Children’s Hospital and is an honorary fellow with the University of Melbourne. She leads clinical and research psycho-oncology teams, focusing upon mental health and quality-of-life outcomes for children treated for cancer and their families.

#

Neevika Manoharan

Neevika Manoharan is a paediatric haematologist, oncologist and a subspecialist in paediatric neuro-oncology working at the Kids Cancer Centre, Sydney Children’s Hospital. She returned to Sydney after completing the Neuro-Oncology Fellowship at Dana-Farber Cancer Institute, Boston Children’s Hospital and Harvard Medical School in 2018/2019. Since her return, she has grown a strong research interest in rare and orphan paediatric brain tumours, development of novel therapeutics and precision medicine approaches in paediatric neuro-oncology.

#

Dr Ursula Sansom-Dal

Dr Ursula Sansom-Daly is the Director of the Behavioural Sciences Unit, UNSW Medicine & Health, a research group dedicated to studying the psychological, ethical and behavioural aspects of child/adolescent cancer. She is also a Clinical Psychologist at Sydney Youth Cancer Service, a large multidisciplinary service specialising in the care of adolescents and young adults with cancer. Dr Sansom-Daly’s research focuses on applying evidence-based psychological models and methods to address the mental health implications of cancer among adolescents and young adults with cancer.

#

Meera Warby

Meera Warby (MGC, FHGSA (Gene Couns) is an experienced Senior Genetic Counsellor specialised in hereditary cancer. Meera holds a dual clinical and research role working with the ZERO Childhood Cancer Program providing genetic counselling expertise to improve outcomes for children and young people diagnosed with cancer. Meera is passionate about helping young people and their families with or at risk of a cancer predisposition syndrome. Meera serves on several local and international committees, including eviQ Cancer Genetics, Human Genetics Society of Australasia (HGSA), HGSA Board of Censors for Genetic Counselling, and the Li-Fraumeni syndrome Genetic Counselling Advisory Group.

#

Siona Hardy

Siona is a healthcare leader, having worked in senior roles in public, private, tertiary and primary healthcare. She is currently the Executive Director of Impact and Youth Cancer Services at Canteen. Her previous roles include Statewide Director for the Queensland Youth Cancer Service and Executive Director at Mater Hospitals Brisbane.

#

Mary McGowan OAM

Mary has extensive paediatric oncology nursing experience with her own lived experience with adult cancer. She has assisted in the development and continues to contribute to many Victorian childhood cancer organisations as well as some national and international nursing and family support groups. Mary has received, The Victorian White Flame Award, A Pride of Australia Medal, The Royal Children’s President’s Medal and in 2021 Mary received recognition in the Australia Day Awards for her phenomenal work in childhood cancer nursing and charity work. Mary is a Board Director of The Children’s Cancer Foundation and she is the cofounder/Community Liaison MY ROOM Children’s Cancer Charity and Oceania Regional Head of Childhood Cancer International.

Connect with us

-->