Cancer Research Needs to Reflect the Diversity of Our Communities

Australia is one of the most culturally and linguistically diverse countries in the world. 1 in 4 Australians are born overseas and 1 in 5 speak a language other than English at home. However, why is it that when it comes to cancer research participation, people from these communities are often excluded, and experience poorer health outcomes?

A group of researchers from Ingham Institute in South West Sydney (SWS) have been working together to not only answer this question, but to actively ‘close the gap’ in health outcomes and research participation of culturally and linguistically diverse communities.

Professor Afaf Girgis, Dr Ben Smith and PhD candidate Verena Wu are part of the Psycho-Oncology Research Group at the Centre for Oncology Education and Research Translation (CONCERT). Led by Professor Afaf Girgis, the team have been conducting research and developing numerous interventions to actively support people living with cancer from culturally and linguistically diverse communities.

“Research in this field is very expensive and challenging. With at least 40% of the population in South-West Sydney coming from non-English speaking backgrounds, if we don’t do the research, who will? There is very clear evidence that people from these backgrounds do less well in terms of psychosocial issues, which is why it is a high priority for my team. There are higher levels of anxiety, higher levels of depression and greater difficulties in communicating with healthcare providers. We need to be working with these populations to improve their access to services and improve their psychosocial wellbeing.”
Professor Afaf Girgis, AM

So why do people from culturally and linguistically diverse communities have poorer health outcomes? Language and cultural barriers, low health literacy and stigma towards cancer are some of the reasons.

As Dr Ben Smith points out —

“Minority communities have far less advocacy and as a result, don’t have that strong voice to push for better care. It’s important that we encourage people to speak up and question their doctors if something doesn’t seem right. That’s really hard for many cultures as the cultural norms include not challenging figures of authority. We need to empower these communities to speak up and advocate for change.”

PROMPT-Care, created by the CONCERT team, is being adapted into other languages.

Verena Wu, research assistant and PhD student at CONCERT, has witnessed first hand the challenges which come from navigating the healthcare system as a non-English speaking person. As a daughter of Chinese immigrants, she was there to support her parents in overcoming these barriers and helping to seek the information they needed.

As she embarked on her research with CONCERT she realised that her story was not unique. This has led her to create a self management resource ‘WeCope’, adapted to ensure it is culturally responsive to the unmet needs of Chinese cancer patients and their caregivers.

“Although there is translated information available, we wanted to go further than to just give information about cancer. We wanted to empower immigrants by giving them practical strategies they can use to manage their wellbeing and everyday lives.” — Verena Wu

Thit Tieu, a Burmese born breast cancer survivor, has been on the receiving end of cancer care. After actively seeking cancer services, she realised that women from other cultural backgrounds were not accessing the many support networks and cancer services that were available. And so she set about to help fill this gap by creating a safe space and community for these women to share their stories and access the support they needed. In 2014 she founded the Sister’s Cancer Support Group, the first multicultural specific cancer support group registered with Cancer Council NSW.

In the Cancer Institute New South Wales Cancer Plan, culturally and linguistically diverse communities are now regarded as one of the priority groups to address the inequalities in outcomes they experience.

“It is very important that the culturally and linguistically diverse communities are included and encouraged to participate in cancer research. I would like to encourage cancer researchers to collaborate closely with culturally and linguistically diverse communities and develop consumer co-design strategies.” — Thit Tieu

The CONCERT team have been working collaboratively to tackle this very issue. In 2020 a co-design workshop was held in partnership with the NSW Multicultural Health Communication Service and the South Eastern Sydney Research Collaboration Hub (SEaRCH) UNSW, with sponsorship from Maridulu Budyari Gumal, Sydney Partnership for Health, Education, Research and Enterprise (SPHERE). It brought together 45 multidisciplinary and linguistically diverse participants including researchers and clinicians, policy makers, consumers and community leaders. The outcome was the development of the following 7 strategies to improve research participation for people from culturally and linguistically diverse backgrounds affected by cancer:

For Dr Ben Smith, the disparities in research participation of people from culturally and linguistically diverse backgrounds is something he has often questioned.

“The kind of research that we do relies on assessing outcomes via questionnaires and interviews but we often exclude people from non-English speaking backgrounds, despite the fact that we know that they have poorer outcomes. It’s never sat well with me. When I started working at CONCERT (SWS), with such a high proportion of people from diverse backgrounds, it felt like a real opportunity to address that imbalance.”

“We have developed a two prong approach — firstly to make participation in research more inclusive; and secondly to address those issues that are specifically important to those communities. We can make such big gains by adapting existing interventions to make them accessible and appropriate for people from different cultural and language groups.

It is important we work together with communities to improve outcomes. We are not going to be able to fix the issue if we’re not engaged with these communities and have their voice represented.” — Dr Ben Smith

It’s clear that the future of cancer research must follow a collaborative approach inclusive of people from culturally and linguistically diverse backgrounds in order to close the gap on these disparities.

Written & Photographed by Kate Disher-Quill. Special thanks to Professor Afaf Girgis, Dr Ben Smith, Verena Wu & Thit Tieu. Thanks to Jessica Wright for additional photography.

Proudly supported by the SPHERE Knowledge Translation Strategic Platform

CONCERT is a Translational Cancer Research Centre funded by the Cancer Institute NSW.

Kate Disher-Quill is a Melbourne-based artist working across photography, film, publication and multimedia.