FormalPara Key Points

  • Women from Māori, Pasifika, and Indigenous Australian communities have higher breast cancer mortality rates and lower breast screening rates and are under-represented in clinical trials research compared to wider Australian and Aotearoa New Zealand populations.

  • There are many challenges in recruiting these communities to clinical trials, including health systems that require an unreasonably high level of health literacy, communication barriers, socioeconomic factors, cultural literacy in the medical profession, location of trials in urban centers, the provision of culturally appropriate resources and support, cultural differences and historical trauma, clinical trial design, and complex and strained health systems.

  • Inequities result in a loss of potential access to new and as yet unavailable treatments for Māori, Pasifika, and Indigenous Australian women. The quality of trial data is also reduced as it is not representative of the whole community.

  • An integrated plan of activities is required to improve the diversity of participation in breast cancer clinical trials to include better engagement with and inclusion of Māori, Pasifika, and Indigenous communities and to improve health outcomes in these most disadvantaged groups.

Breast Cancer Trials (BCT) is the largest independent oncology clinical trial research group in Australia and Aotearoa New Zealand. Founded in 1978, BCT conducts a multicenter national and international clinical trials research program, involving 926 researchers in 114 institutions across both countries. To date, more than 17,000 individuals have participated in BCT clinical trials.

BCT hosts free, public events throughout the year, discussing key topics related to breast cancer and clinical trials research. On July 24, 2023, as part of the BCT 44th Annual Scientific Meeting program, BCT held a Q&A at Auckland Museum (Aotearoa New Zealand) on the topic of breast cancer in Māori, Pasifika, and Indigenous communities.

The Q&A panel was made up of women with a history of breast cancer and researchers in the field, including Ms Ali Coomber, Ms Andrea Casey, Ms Maria Marama, Associate Professor Andrew Redfern, Dr Rob McNeill, and Dr Reena Ramsaroop. The event was moderated by journalist and broadcaster, Stacey Morrison (Fig. 73.1).

Fig. 73.1
A photo captures a man in the foreground recording the Q and A session with a group of seven researchers, who are all sitting near a table in the background. A presentation screen is noted behind the panel, and the text at the bottom reads, trials save lives.

The Q&A panel from L–R: Maria Marama, Andrew Redfern, Ali Coomber, Stacey Morrison (moderator), Andrea Casey, Rob McNeill, and Reena Ramsaroop. (Photo: S Ferguson)

Full size image

Background

Breast Cancer in Māori, Pasifika, and Indigenous Australian Communities

Breast cancer is the most common cancer among women in Māori, Pasifika, and Indigenous Australian communities [1, 2].

The report 30,000 Voices: Informing a Better Future for Breast Cancer in New Zealand found that Pasifika women are 52% more likely and Wāhine Māori (Māori women) are 33% more likely to die of breast cancer within 10 years of diagnosis, compared with Pākehā (European ancestry) women [3]. The report found that Wāhine Māori are more likely to have higher-risk HER2-positive breast cancer than Pākehā women. Pasifika women have the highest rates of life-threatening stage 3 and 4 breast cancer and HER2-positive cancers, and more fast-growing grade 3 tumors than all other ethnicities.

Aboriginal women in Australia are 0.9 times as likely to be diagnosed with breast cancer but are 1.2 times more likely to die from breast cancer than the wider population. The five-year survival rate for Aboriginal women with breast cancer is 81%, compared to 92% for the general population. Breast screening rates for Aboriginal women are 37.3%, compared to 53.2% for non-Indigenous Australians [4].

Under-representation in Clinical Trial Participation

Research into medical oncology clinical trial participation by ethnic groups in the Auckland region of Aotearoa New Zealand from 2004 to 2010 [5] found an under-representation of Māori and Pasifika communities when compared to participation levels of people of European descent.

An analysis of Australian-based clinical trials registered on the Australian New Zealand Clinical Trials Registry or ClinicalTrials.gov from 2008 to 2018 compared trials with and without a focus on Indigenous health [6]. Of 9206 clinical trials included in the study, only 139 or 1.5% focused on Indigenous health. Among trials with an Indigenous Australian focus, those relating to cancer were significantly under-represented relative to those targeting other conditions, despite cancer being the most common broad cause of death, and breast cancer being the second most common cancer diagnosed among Aboriginal and Torres Strait Islander people [7].

In addition, a gap exists between those cancers studied in phase 3 and 4 clinical trials and those that are most common in Aboriginal and Torres Strait Islander populations [8]. Despite breast cancer accounting for 12.1% of new cancers in Aboriginal and Torres Strait Islander populations, only 7.9% of phase 3 and 4 trials are conducted in the field of breast cancer research.

The following is a summary of the Q&A panel discussion on the challenges of recruiting Māori, Pasifika, and Indigenous Australian populations to breast cancer clinical trials and potential activities that may help to overcome some of these barriers.

Breast Cancer Clinical Trial Recruitment Challenges

Socioeconomics and Geography

  • Māori, Pasifika, and Indigenous Australian populations tend to be in lower socioeconomic groups, so financial costs, such as childcare, transport and travel, and time off work are barriers to participating in clinical trials.

  • Trial locations frequently do not line up with where Māori, Pasifika, and Indigenous Australian people live. In Aotearoa New Zealand, for example, most cancer trials are Auckland-based, with relatively few trials available in other urban centers.

Culture and Customs

  • Medical teams lack understanding of the histories of Indigenous groups and their customs, beliefs, and expectations. As a result, Indigenous communities often have difficulty trusting medical professionals with whom they are unfamiliar or with whom they lack any relationship.

  • Negative experiences of the health system lead to distrust of medical professionals and of the health system in general.

  • Indigenous people may be affected by historical trauma, in particular the negative hospital or health-setting experiences of past generations. This trauma can be passed down through generations, with family members continuing to share negative experiences. For example, the hospital death of a family member can leave a long-standing impression of hospitals and health settings as places where people go to die, while the removal of children by authorities from hospital settings can create a lack of trust in the health system. Negative interactions can lead to feelings of powerlessness and vulnerability and the belief that Indigenous individuals or communities cannot impact or change the system.

  • Indigenous people want to know what happens to their tissue samples or anything else that may be taken from their bodies. For example, bodily fluids and tissue contain what Māori call their whakapapa (genetic line of descent) and in the absence of information, they can be left wondering if they are part of a big experiment.

Language and Communication

  • Information about clinical trials and how Māori, Pasifika, and Indigenous Australian communities can access these is lacking. Clinical trial information is often only written in English and therefore is not accessible to people for whom English is a second language.

  • Despite being written for the general patient population, clinical trial materials such as patient consent information may still contain terminology that is unfamiliar and has not been created to include Indigenous trial participants. Lack of understanding of the trial rationale and expectations of specific treatments is a further barrier to participation.

  • Navigating the health system is challenging and difficult at the best of times. Insufficient support personnel, including trained navigators and translators with knowledge about clinical trials and the clinical trials process, further exclude Indigenous trial participants.

  • Some clinicians may not feel confident working with Indigenous individuals who are not proficient in English.

  • Insufficient resources and information are available in Indigenous languages, and these are needed to enable understanding and awareness of clinical trials. For example, Aotearoa New Zealand is home to people from at least 14 Pacific nations. Current promotional campaigns do not appropriately target Indigenous audiences in their own languages.

Clinical Trial Design

  • There is a lack of consultation with Māori, Pasifika, and Indigenous Australian communities in the design of clinical trials and a dearth of researchers from these cultural backgrounds.

  • Exclusion criteria impact trial participation. For example, lack of English proficiency, the presence of comorbidities, or otherwise poor health status are excluding factors that are more prevalent in Indigenous communities.

  • Many clinical trials are global studies and the number of trial participants required in each country may be small. Therefore, attracting meaningful numbers of Māori, Pasifika, and Indigenous Australian populations into these trials can be difficult.

Health System and Funding

  • Local and international trials lack the funding to address barriers to the participation of Indigenous Australian, Aotearoa New Zealand, and Pasifika communities.

  • Medical professionals recruited to and conducting trials lack cultural competency and safety training, thus diminishing trust.

  • Health systems are designed on a Western/European model of healthcare and do not encompass Indigenous models of health and wellbeing.

  • Individuals from European backgrounds dominate the health workforce, with an insufficient number of doctors, nurses, and health professionals from Māori, Pasifika, and Aboriginal backgrounds.

  • Adequate time is required to ensure the fully informed consent of Indigenous peoples participating in clinical trials. This can be a challenge in overworked health systems where resources are already stretched.

  • Bias and racism in the health system lead to lower recruitment.

  • Culturally appropriate services to support Indigenous peoples through cancer treatment and post-treatment are insufficient.

Addressing Challenges

  • More engagement with Māori, Pasifika, and Indigenous Australian communities and consumers is required, with greater efforts to build trusting relationships.

  • Co-design and co-governance principles should be used in the design and implementation of clinical trials to ensure the integration of Indigenous communities.

  • Investment and training are needed for a more diverse and culturally appropriate healthcare workforce.

  • Support for Indigenous peoples and their families when navigating the health system needs to be increased.

  • Health professionals need to receive more cultural competence training and cultural safety training.

  • Language and communication barriers need to be reduced and people with different levels of health literacy need to be accommodated.

  • Clinical trial exclusion criteria need to be reviewed and amended.

  • Clinical trial reimbursement needs to cover a broader range of costs for participants, such as travel, car parking, and childcare.

  • Clinicians need to be more aware of the challenges of recruiting Indigenous people to trials.

  • Smaller towns and cities outside large urban areas should be included in trial recruitment and participation opportunities.

  • Clinical trial campaigns should utilize languages and role models from Indigenous communities to promote the benefits of participating in clinical trials.

  • Recruitment to clinical trials should be incentivized.