Improving Access to clinical trials for culturally and linguistically diverse (CALD) populations

Australia and Cultural Diversity

Australia is a multicultural society, with a population that includes many people born overseas, or who have a parent born overseas or speak a variety of languages. Together, these groups of people are known as culturally and linguistically diverse (CALD) populations.

The 2021 census showed that 27.6% of the Australian population were born overseas and the top 5 languages spoken in the home, other than English, were Mandarin (2.7%), Arabic (1.4%), Vietnamese (1.3%), Cantonese (1.2%) and Punjabi (0.9%). The figures from the Australian Bureau of Statistics (ABS) revealed that over 300 separate ethnic backgrounds were identified in the 2016 census, with over 300 separately identified languages spoken in Australian homes.*

Due to the large number of Australians belonging to CALD groups, research into cultural diversity has been attracting a lot of attention from researchers and policymakers in Australia. This diverse group of people have been reported to experience health inequalities and unique circumstances such as language barriers, prejudice, discrimination, and racism.

Access and participation on cancer clinical trials for CALD communities

Dr Abhijit Pal, a medical oncologist working as a staff specialist at Liverpool Hospital, recently presented some of the findings from his PhD. His study is looking at ways to improve the representation of patients from culturally and linguistically diverse backgrounds (CALD) on cancer clinical trials.

Dr Pal works in Liverpool, an area of southern Sydney that is extremely culturally diverse. One in two people are from a background other than Australian and speak a language other than English. His research aimed to survey the cancer clinical trials workforce in Australia to understand the challenges facing recruitment of CALD patients to cancer clinical trials.

It is understood that patients with cancer from CALD backgrounds face challenges at every step of the patient journey from screening, diagnosis, standard of care and discussion about clinical trials.

“Inequity in cancer clinical trials has been a perennial issue and is becoming more noticeable this year. It is simply not fair that one sector of the community repeatedly does not get access to the wonderful advances that are being made every year in medical oncology through clinical trials – new anti-cancer therapies which offer better quality of life or longer survival are for everyone, not just a select few. We all need to do our part at the community, site and sponsor level to address this complex inequity and the many barriers that patients from CALD backgrounds face in being recruited to cancer clinical trials. At the very least, we need to measure properly and collect the correct data on CALD recruitment at site and sponsor level so we can benchmark the inequity for future years.” Dr Abhijit Pal

Plenary: Raising your voice for equity in cancer care

Improving access to cancer clinical trials for patients from CALD backgrounds whose preferred language is not English –Results of a National Survey in Australia (Current Resources)

Dr Abhjit Pal On behalf of Dr Ben Smith, Ms Christie Allan, Dr Deme Karikios, Professor Frances Boyle Chair: Associate Professor Haryana Dhillon

Studies in Australia, UK and USA clearly demonstrate a systematic and consistent under representation of patients from ethnic minorities and CALD backgrounds on cancer clinical trials.

Cancer clinic appointments for CALD patients:

• Prior to March 2020 – appointments provided an in-person interpreter but at least double the length of a consultation without an interpreter • Last two years – all appointments have been provided via a phone interpreter which was even more difficult than in-person

Survey results

The survey developed by Dr Pal was distributed to the Clinical Oncology Society of Australia (COSA), the Medical Oncology Group of Australia (MOGA) and 14 cancer cooperative trials groups – which included ANZUP. The key questions, and some remarkable answers in the survey included:

• Question 1: Does the trial unit routinely collect data on preferred language or ethnic backgrounds of patients enrolled onto cancer clinical trials.

• Answer 1: 74% of respondents did not collect routine data • Question 2: What services does your unit have available to assist CALD or CALD-PLNE (preferred language not English) patients to access and participate in cancer clinical trials?

• Answer 2: Only 43% of respondents said they had in person medical interpreters and 30% had nothing available at all. This then leads to a huge barrier to

access to clinical trials.

For scientific purposes, it is important to have representation across cultural groups. Without a true cross-section of the population on trials there will be a limited understanding of how certain medications may affect people of different ethnicities. If participants in research reflect the true diversity of our society and culture, then evidence generated from investigator-led trials has the potential to be more generalisable and relevant for the broader Australian population, including the more vulnerable groups in need of high-quality care.

Interpreter services are one barrier to providing cancer clinical trials access to the CALD community. Often interpreters are unable to fully explain the intricacies of cancer treatments and the rationales of treatments, so patients do not end up fully informed about the clinical trial. In addition, face-to-face interpreter services have been restricted due to the pandemic. They are in high demand and not always available when required.

The survey results also demonstrated that many institutions do not have systematic processes in place to help CALD and CALD-PLNE patients gain access to partake in clinical trials.

Next steps in cancer clinical trials

As trials evolve, the clinical trials teams should be required to report all the ethnicity, cultural and linguistic data, and also think more about future trial protocol development and how to collect information of patient populations systematically.

Crucially, interpreter services are pivotal in the delivery of clinical trials. Very few clinical trial sites and hospitals have specific CALD services. There is a clear need for more interpreters and interpreters trained in communicating clinical trials.

Improving access to clinical trials for patients from CALD backgrounds:

• Provide more in-person interpreters • Provide more trained interpreters • Develop translated patient resource materials • Trial navigators needed to help people get onto trials

Taking cultural differences into account can help make trials and resources more accessible, inclusive, and responsive to the needs of all people who require assistance. In contrast, poor identification and communication with CALD populations might lead to ineffective resource allocation and interventions.

ANZUP plans to review their clinical trials to assess if they are accessible to all, regardless of ethnicity and preferred language.

References

* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7830035/