Invest the time to build trust with marginalized research participants | Wbactive

Pamela Laird (right) and her team have spent years gaining the trust of Indigenous Australian mothers whose children participate in respiratory research.Credit: Pamela Laird

decolonization of science

Science is steeped in injustice and exploitation. Fringe scientific knowledge has been erased; natural history samples were taken without consent; and genetic data has been manipulated to support eugenics movements. Without the recognition and redress of that legacy, many people from minority ethnic groups have little faith in science and certainly do not feel welcome in academia – a persistent obstacle to the level of diversity that many universities profess to strive for.

In the next in a short series of articles on the decolonization of life sciences, pediatric lung researcher Pamela Laird outlines the steps clinical researchers must take to establish and maintain trusting relationships with the indigenous communities they serve. Laird’s team, based at the University of Western Australia and the Telethon Kids Institute, both in Perth, has spent years laying the groundwork for research into respiratory diseases in Indigenous Australian children.

Historically, research in Australia has been a dirty word among First Nations communities, who are among the best-studied people in the country. They received no ownership of the data generated through their participation, no recognition of their sovereignty, and no help in building their own research capacities. But there has been a national push to ensure that research is driven and shaped by Indigenous Australians themselves. Increasingly, national funders, including the National Health and Medical Research Council, are requiring applicants to provide evidence of Indigenous partnerships, including Indigenous leadership.

I am a Pediatric Respiratory Physician at the University of Western Australia in Perth. I do research at a children’s hospital in Perth called the Telethon Kids Institute and travel to remote areas where the majority of the state’s indigenous people live. Wet cough, a respiratory infection that’s preventable if caught early, is the earliest symptom of a chronic condition called bronchiectasis, which can lead to scarred or damaged lungs. Around 1.5% of Aboriginal children in remote areas have bronchiectasis, a major problem in these communities. We try to find out all the factors that play a role – including socio-economic and environmental hazards like dust. In order to offer help in a decolonizing way, my team, which consists mostly of non-Indigenous people, needs to be invited into the community by the elders and other key local members. It took two years of building relationships to be invited. It took another two years of talks before we could start the research.

Many researchers don’t take that much time, but Western models of research won’t work in First Nations. These communities are truly hungry for health information – and because they could see that my colleagues and I would not give up, they embraced what we were trying to do. We ensured that respiratory physicians and trained clinical staff could provide assistance and training for local providers. As the families got help, more trust developed and more community members got involved in what we were doing. It was amazing. We now have 94% acceptance rates for our studies in four remote communities.

The biggest lesson I’ve learned is first: do no harm. Also, do what you say and follow through. You need to allocate much more time to this approach and maintain communication at every step. We put up posters when our clinicians came into the area. After each visit, we reported to the community how many children were treated. When COVID-19 prevented us from traveling, we kept the conversation going via Facebook and video conferencing. It requires a lot of patience because cultural differences will emerge. For example, they may spend Aus$5,000 (about US$3,500) to bring a team of two or three to a church and then are unable to enter because there has been a death and they mourn for a month called Tut mir sorry business.

I advise researchers wishing to work with these communities to have a solid understanding of our country’s history, tragic as it is, and of Indigenous Australian culture. I also guide colleagues to be culturally sensitive. As you enter a space, be aware of the historical power divide between white, majority Australians and marginalized members of the Aboriginal community. Also note the power imbalance between doctor and patient.

First I wanted to find out how many children had bronchiectasis and I wanted to do computed tomography scans of their lungs to better diagnose diseases or test treatments. I’m still gone after six years, but we have treated and rescued more than 100 small pairs of lungs.

This article has been edited for length and clarity.

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