This webinar will be delivered in three parts:
Part 1: The landscape
The first part of the webinar will cover current state of knowledge and research about representation on Australian cancer clinical trials. It outlines the landscape, where consent is problematic, especially for some populations (CALD). The long and legalistic consent form is inherently an issue. We will describe current minimum data collection, discuss international experience on disparity and the solutions to improving equity on cancer clinical trials in Australia. We will also discuss co-design work in South West Sydney.
Part 2 – Improving consumer choices: Equitable support for clinical trial participation
It is imperative that patients receive appropriate information about their treatment options. Clinical trials, especially early phase clinical trials, are no different. However, to many, clinical trials are a mystery. For potential participants, a lack of understanding around clinical trials can impede their decision making. With a lack of available resources, this issue is compounded for culturally and linguistically diverse (CALD) consumers.
The VCCC Alliance’s Accelerating Novel Therapies embarked on an ambitious project to fully understand the needs of consumers and provide examples of these resources in the most appropriate format. This presentation will outline the project’s findings to date, highlight examples of patient-facing materials, including the development of translated versions of a consumer resource for potential trial participants.
Recommendations from Early Phase Awareness project (Prog 3) demonstrated how consumers wanted information provided to them that would support the decision to go on trial. One recommendation was to have translated documents, so a good example was sought and translated into multiple languages.
Part 3 - The CT:IQ InFORMed project
Dr Lisa Eckstein will update attendees on the CT:IQ InFORMed project, which is developing a participant-centred approach for obtaining informed consent for Australian health and medical research. Equity has been a central lens for the project’s development, including the use of plain English, tiered provision of information, and encouraging the use of visual and multimedia strategies.
Dr Lisa will go on to provide information about a follow on project conducted in partnership with the VCCC Alliance, Beyond the Form, which is assessing strategies for ongoing communication with research participants, to ensure that respect is shown to them throughout their research journey. The InFORMed project (CT:IQ) has worked extensively to reduce the consent form into something much more equitable, accessible and manageable.
After completing her mDredical oncology training, she pursued a two-year fellowship at Peter MacCallum Cancer Centre and the Melbourne Genomic Health Alliance where she investigated genomic sequencing in cancer therapy. Kortnye works predominantly in lung cancer and melanoma as well as focusing on her passion to improve patient equity by coordinating the Oncology in the Home program in Melbourne.
Dr Abhijit Pal specialises in Phase 1 cancer trials and thoracic malignancies. He completed a Phase 1 trials fellowship at the Drug Development Unit, Royal Marsden Hospital in London from 2019 – 2020. He was awarded a PhD in 2023 through the University of Sydney (supervised by Professor Frances Boyle), looking at informed consent for Phase 1 trials and ways to improve the representation of patients from culturally and linguistically diverse backgrounds on to cancer clinical trials.
Initially training as a nurse and working in Western Australia, he went to Oxford, UK in 2007 where he commenced his career in clinical trials. Returning to Australia in 2010, he worked at Peter MacCallum Cancer Centre as a Senior Research Nurse and Team Leader before changing his career to Program Management at the VCCC Alliance, focusing on clinical research. Duncan currently oversees the Programs of Clinical Trial Innovations and Accelerating Novel Therapies.
Dr Lisa Eckstein was previously senior lecturer in the Faculty of Law at the University of Tasmania, where she chaired the Tasmania Health and Medical Human Research Ethics Committee. She has published on the regulation of clinical trials, genomic privacy, and consent.
