A not-for-profit-funded pilot study has significantly increased the number of Indigenous patients involved in a genomic screening program for cancer.
If you (fund it and) build it (properly), they will come.
That’s the conclusion from a recent viewpoint, published in the Internal Medicine Journal, which recounts the experiences of staff from the Alan Walker Cancer Care Centre (located at the Royal Darwin Hospital) in recruiting patients for the Cancer Screening Program (CaSP), operated by not-for-profit Omico.
“[CaSP] provides free comprehensive genomic profiling (CGP) for eligible Australians with advanced, incurable or poor prognosis cancers to help identify potential matches to biomarker-led clinical trials and other treatment options,” Omico’s website reads.
“The information collected through CaSP helps researchers, clinicians and policymakers better understand how CGP is used in practice, its impact on patient care, and how precision oncology can be implemented more effectively across Australia to benefit future patients.”
The AWCCC had been participating in CaSP since mid-2023 but had only had two Aboriginal patients referred to CaSP between joining the program and the early stages of 2026 – representing just 4% of the total number of recruits despite Aboriginal and Torres Strait Islander people accounting for around 30% of the Northern Territory’s population.
Seeing low levels of Indigenous participation in research trials is not a new phenomenon, nor is it something that is limited to Australia.
In an attempt to improve engagement and enrolment with CaSP, the AWCCC established a financially supported collaboration with Omico, which allowed them to recruit a trial nurse coordinator and an Aboriginal liaison officer, with the goal of improving the recruitment of Aboriginal and Torres Strait Islander patients.
“Our institution implemented a structured, culturally informed recruitment model designed to improve Aboriginal patient participation. A part-time clinical trials nurse and a dedicated ALO were appointed for 12 months to support recruitment and provide culturally appropriate engagement,” wrote the authors.
Many obstacles emerged along the way, forcing AWCCC staff to be flexible and problem solve on the fly. Patients did not want to attend additional appointments to learn about the study and sign consent forms and the timing of integrating the ALO and introducing the study to patients during routine consults proved tricky. But the AWCCC staff continued to troubleshoot, surveying clinicians to identify potential barriers and reasons for non-referral to CaSP.
And despite the challenges, the introduction of a dedicated clinical trials nurse and ALO had the desired effect on the recruitment of Indigenous patients. During the year-long trial, 35 Aboriginal patients were referred to the study. This represented a quarter of all trial recruits and is markedly higher than the 10 Aboriginal patients who were recruited in the six months after the funding for the dedicated nursing and ALO positions were withdrawn.
“This demonstrates that culturally specific staffing and proactive review processes substantially increase engagement and equity in clinical trial participation,” the authors said.
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“The recruitment gains observed during the period with a dedicated clinical trials nurse and ALO highlight the effectiveness of embedding culturally specific roles into routine trial operations. Sustaining such roles is essential to maintaining equitable access.
“Future efforts should also incorporate formal training for clinicians and research staff to standardise explanations of complex trial concepts, such as experimental treatments, inheritability, randomisation, and placebo use, to ensure clarity and reduce misunderstanding during consent discussions.”
The authors felt their experiences highlighted several important learnings related to improving Aboriginal and Torres Strait Islander participation in clinical trials.
“The complexity of consultations was a consistent challenge, with many patients presenting with multiple comorbidities, limited health literacy, language barriers and unfamiliarity with genomic concepts,” they noted.
“Genomic profiling is a complex concept, and it was a delicate balance to ensure the clinical discussion neither overwhelmed nor over-simplified. Misunderstandings around hereditary cancer risk were common, including concerns about ‘blame’ within families or misconceptions that inherited mutations were transmissible.
“These factors required extended consultation time and additional support, especially as clinicians often attempted referral and consent within the same visit.”
Communicating with potential trial participants was also a sticking point – but not one that was without solutions, they said.
“The standard CaSP trial procedures required remote consent via email or telephone with the external sponsor, our site obtained special approval to conduct face-to-face consent meetings to ensure equitable and culturally safe participation,” they wrote.
“Many patients living remotely in the NT do not have a mobile phone or access to reliable phone coverage.
“In many instances, patients’ postal address is listed as that of the local health clinic, with these centres playing a vital role in communication. Additionally, the lack of a valid email address proved to be a barrier for referral completion; this issue was surmounted by using a generic email address.”
The authors concluded that culturally safe trial design, adequate staffing, and flexibility were key to improving Indigenous representation and ensuring participation in research studies remains equitable.
