Engaging diverse communities in clinical research
Australia is one of the most culturally and linguistically diverse (CALD) countries in the western world, yet this diversity is highly underrepresented in the health and medical research sectors.
Dr Josefine Antoniades and Dr Humaira Maheen are two early to mid-career researchers who aim to help address this issue through a new MACH special interest group.
People from CALD backgrounds are often excluded from research projects due to a perception they are hard to reach or are assumed to be unwilling to participate.
Dr Josefine Antoniades, Research Fellow at the National Ageing Research Institute (NARI), says language is often the barrier: “Research often requires participants to speak English. This excludes many refugees and asylum seekers – or even older people – who either don’t speak English or feel comfortable doing so.”
This lack of diversity limits the generalisability of research findings and impacts health equity – leading to calls for an increased participation of CALD communities in research.
In a webinar aimed at early to mid-career clinician researchers, eight experts from across the MACH network – including Dr Antoniades and Dr Humaira Maheen from the University of Melbourne – explored the challenges of increasing participation of CALD communities in clinical research.
Through presentations and discussions, the panel recognised these challenges can be overcome with effective planning, flexibility and consultation with key stakeholders, as well as appropriate funding to cover costs including translation.
Dr Maheen says a key takeway for her was making inclusiveness “a more mainstream idea” in clinical research: “That way you don’t need separate researchers to do CALD research. There has to be inclusiveness in almost every kind of research.”
Central to including CALD participants in clinical research is authentic engagement with communities through community leaders and local organisations – and including them from the planning phase.
This establishes relationships of trust between researchers and CALD participants, and helps gain insights about issues relevant to the community.
Research should be made as accessible as possible. This could be achieved by including flexibility in the consent processes, giving participants agency over the level of detail they wished to receive, the modes of consent and the language used.
Collecting data at locations more convenient to the participants and providing reimbursement for transport and participation will also make CALD communities more likely to engage with research projects.
Research involving CALD communities typically requires a larger budget to cover community engagement, translation and interpreter costs, or appointment of bi-lingual workers.
Through planning the webinar, Dr Antoniades and Dr Maheen met researchers and professionals from very different specialisations and shared ideas.
“It was great to see a lot of the things I’m thinking are also important to others. It confirms I’m on the right track,” says Dr Antoniades.
“Given the very diverse group researchers and professionals involved, we decided to launch a special interest group for MACH to connect people interested in learning more about CALD research and to also establish the potential for collaboration in Melbourne.”
“We’re keen on inviting people from other interest groups, so we can see what everybody’s doing, learn from each other and help support each other’s research.”
Dr Maheen says the special interest group will also connect researchers new to engaging with CALD communities to more experienced researchers who work in the area.
“If somebody is developing a clinical trial, they may think: ‘We should also include different ethnic groups. What’s the best way forward?’”
“We can give them ideas of how it should work and provide them with channels and networks.”
Register your interest to be part of the MACH Culturally & Linguistically Diverse (CALD) research interest group.