Improving access to clinical trials

Best practice patient care outlined in the Optimal Care Pathways recommend that, where practical, patients should be offered the opportunity to participate in research or clinical trials. Clinical trials provide patients with early access to new therapies in highly controlled care settings and may lead to improved cancer outcomes. Yet less than 6 percent of Victorians diagnosed with cancer each year participate in clinical trials for their cancer treatment.

Many barriers exist to participating in clinical trials including:

• limited awareness and understanding of clinical trials from clinicians and the public
• inequities in accessing clinical trials, including for Aboriginal and/or Torres Strait Islander populations, people from rural and regional areas and of culturally and linguistically diverse backgrounds; and
• limited systems and metrics to accurately measure, compare and report on clinical trial activity and impact in Victoria. 

Cancer Council Victoria is committed to working with the Victorian Government and healthcare sector to improve participation and reduce inequities in access to cancer clinical trials in Victoria.

“Clinical trials are a lifesaving option but when patients have difficulty locating them, it could be the difference between life and death. Not all doctors are familiar with all trials available to patients leading to patients self-navigating.” – July 2019 community consultation survey response

In 2018 and 2019, we facilitated Clinical Trials Roundtables to discuss how state-wide monitoring and access to clinical trials could be improved in Victoria. The aim of these discussions was to identify and explore considerations for a more integrated approach to the collection and reporting of cancer clinical trial data in Victoria to drive patient access and recruitment into clinical trials. Feedback from the roundtable discussions informed Cancer Council Victoria's submission to the Victorian Cancer Plan.

Read our submission to the Victorian Cancer Plan

Impact of COVID-19

In 2020, COVID-19 had a significant impact on the delivery of cancer clinical trials in Victoria. Many clinical trials were forced to close recruitment or adapt workflow, due to shortfalls in staff and resources and changes to guidelines around patient management and risk.

To understand the scale and diversity of the COVID-19 impact, and to inform potential future advocacy and investment in the clinical trials sector, we collaborated with the Victorian Government through the Victorian Cancer Agency on a survey of cancer clinical trial units in Victoria.

Read our COVID-19 impact report

Adolescents and young adults

Cancer is not constrained by the social definition of adulthood, ‘18 years and over’. Adolescents (15-17 years) develop adult-type cancers, and young adults (18-25 years) develop paediatric-type cancers. For these patients, there is often a disconnect between place of care, tumour-specific cancer expertise, and access to state-of-the-art treatments via clinical trials.

Work conducted as part of an alliance through the Victorian Comprehensive Cancer Centre (VCCC) aimed to improve access to clinical trials for adolescent and young adult (AYA) cancer patients.

In 2020, the alliance succeeded in its request to the Australian Therapeutic Goods Administration (TGA) to adopt the US Food and Drug Administration (FDA) guideline to include adolescent patients in adult oncology clinical trials. In addition, an AYA clinical trial ethics and governance guideline and a standard operating procedure for young adult access to a paediatric clinical trial, have been developed and are now available for implementation in healthcare settings.

Read our submission to TGA

Underrepresented communities

Victoria has one of the most culturally and linguistically diverse (CALD) populations in the world, yet cancer patients from CALD backgrounds are prevented from participating in cancer clinical trials due to a lack of opportunity, as well as cultural and communication barriers. This limits the broad application of trial results and increases health disparities in cancer outcomes.  

We’re working to identify and implement ways to improve CALD patients in cancer clinical trials to improve health equity.

Rural and regional access

Patients with cancer living in regional and rural Victoria experience lower five-year survival rates than those living in metropolitan areas. In addition, less than a third of patients recruited to a Victorian clinical trial live in a regional or rural area.

To support clinical trial capacity building in regional areas, Cancer Council Victoria and the Victorian Government through the Victorian Cancer Agency funded the establishment of the Regional Trial Network-Victoria in 2017 to increase clinical trials in regional areas and improve collaboration between trial units. This start-up funding has led to an $18.6 million grant from the Australian Government Medical Research Future Fund, to help bridge the metro-regional clinical trials gap.

Read more about our clinical trial grants