Born out of red desert dust and determination

The Western Desert Kidney Health Project is a Rural Clinical School of Western Australia success story. A tale of 10 remote communities and local and state organisations that came together in a bold attempt to reduce diabetes and kidney disease in WA’s Goldfields and Western Desert.

At its centre – a team of Aboriginal health workers, researchers, artists, medical students and doctors who covered an area bigger than the state of Victoria, starting 500km east of Perth and extending 2000km to the border with South Australia.

Also drafted to play an important role, Fremantle Dockers’ AFL footballer, Sam Switkowski, who is in his final year of an environmental engineering degree at RMIT University.

How it all began and ‘Mara Yungu’

It was series of conversations at funerals, explains Dr Christine Jeffries-Stokes from UWA’s Medical School and the Rural Clinical School of WA, which formed the genesis of the project.

“These were funerals of community members who’d died from kidney disease, diabetes or associated complications,” says the paediatrician who has worked in clinical practice and research in the Goldfields for more than 25 years.

“Type 2 diabetes is the leading cause of avoidable mortality for Aboriginal people here, accounting for 20 per cent of deaths. For kidney disease it’s six per cent – the area is estimated to have the second highest rate of end-stage kidney disease in Australia.

“The community wanted something to be done to prevent this loss of life and came to us in the hope that with our skills and knowledge and our strong local connection, we may be able to help.”

Dr Christine Jeffries-Stokes from UWA’s Medical School and the Rural Clinical School of WA

The ‘we’ included Dr Jeffries-Stokes’ sister-in-law Annette Stokes AM, a senior woman of the three main tribal groups for the region – the Wongutha, Mulba-Ngadu and Anagu tribes – and an accomplished artist and musician.

Ms Stokes’ cultural standing meant she was able to talk frankly to senior members and elders as the ground-breaking study was scoped out; consulting around campfires, in kitchens over cups of tea, in art gatherings and at formal workshops.

“The study communities were small and in remote and very remote areas of Australia, with extremes of temperature, weather and facilities, so the practical challenges were great and a lot of  commitment and time had to be given to developing relationships and engaging fully with the community,” Dr Jeffries-Stokes explains.

The concept of ‘Mara Yungu’, which roughly translates to ‘offer your hand’, was also important in the study design. While it has many overlapping meanings, for the Goldfields and Western Desert tribal groups, it implies an opening of spirit and a sharing of trust.

“For our project it meant offering your hand to help, a process of two-way learning where people contribute different skills or knowledge to solve a common problem.”

Artists and dancers join the study team

Between 2010 and 2014, the project team visited more than 30 community residences from Norseman to Tjuntjuntjara, spending a fortnight in each community annually and carrying out health assessments on 597 adults and 502 children, including almost 80 per cent of the total local Aboriginal population.

“We collected health data using a mobile clinic truck equipped with point-of-care machines,” Dr Jeffries-Stokes says.

“Medical histories were recorded on paper, usually in a private but open air environment, which was significant culturally because it demonstrated privacy but not secrecy.

“Many Aboriginal communities are fatigued by research that apparently returns little but bad news, so the challenge was to find ways of engaging and lifting the spirits of members while collecting this sensitive data in culturally secure ways,” she adds.

To meet that challenge, a decision was made to have artists and dancers join of the study team of Aboriginal health workers, researchers, medical students and doctors.

Traditional sand drawings, animation, sculpture and dance were used to deliver key health messages, setting new standards for innovative community-based research.

Spotlight on poor quality drinking water

The researchers found that risk factors for kidney disease and type 2 diabetes were present in participants of all ages, including children as young two, with no significant difference between Aboriginal and non-Aboriginal children, suggesting that it might be common exposures that are to blame, rather than ethnicity.

Aboriginal and non-Aboriginal adults had twice the burden of type 2 diabetes than the standard Australian population and 51 per cent of Aboriginal adults and 27 per cent of non-Aboriginal adults had at least one marker of kidney disease. Aboriginal women were the highest risk group.

Dr Jeffries-Stokes said high levels of acid and blood in the urine of participants suggested factors contributing to chronic metabolic acidosis and inflammation or irritation of the urinary tract needed to be explored.

Of all the contributing factors, drinking water was of particular concern.

“In most of the study areas, drinking water is heavily contaminated with nitrates and, in at least one community, uranium. One of the effects of uranium ingestion is kidney inflammation and damage, which is exacerbated by the presence of nitrate and the formation of uranyl nitrate.

“In two communities – Mulga Queen and Mount Margaret – a 2020 review by the Western Australian Auditor General showed there’d been no improvement in water quality over the past five years, and nitrate levels remained above international and Australian health guidelines,” she says.

Fremantle Docker Sam and the quest for fresh water

Mr Sam Switkwoski is part of a team from Optimos, D2K Information, RMIT, UWA and the University of Queensland that has been designing and testing pilot technologies to remove nitrate from drinking water.

Sam Switkowski, AFL Footballer

As the only WA-based person in the RMIT team who’d been tasked with looking at water treatment options, he was able to visit Mulga Queen and surrounding communities in June to take water samples and speak directly to locals about their drinking water challenges.

“The other three members of my team are currently testing three potential water treatment systems at RMIT in Melbourne to work out which will be the most efficient and the most feasible to implement,” Mr Switkowski says.

“For me personally, it’s been fantastic to experience another side of WA and to have been welcomed into several indigenous communities.  It’s clear they aren’t getting the essential services they deserve, and as a result their health and wellbeing is at a higher risk.

“I’m incredibly grateful for the experience the project has given me and the opportunity that RMIT has provided in doing something purposeful and helpful for indigenous people. It’s ignited a passion in me and a determination to make a positive impact to those who don’t have access to clean and safe drinking water.”

Dr Jeffries-Stokes says the increasing burden of kidney disease and type 2 diabetes is a global problem, especially for remote and Indigenous populations.

“Until our study there hadn’t been too much investigation into the reasons why this was happening in the Goldfields and Western Desert,” she says.

“As well as us looking at drinking water, communities have been able to use the health information and support that we provided to make changes in other areas. All five towns now, for example, have a grocery store with an emphasis on fresh foods.

“Two towns and two communities have also planted fruit trees in public gardens and the schools have new fruit and vegetable gardening programs.

“At the same time as we did this study, our aim was to develop research skills in the community, while developing community capacity to combat these diseases and contribute to ‘Pulkurlkpa’ – a deeply soul-felt sense of joy, hope, optimism and resilience. I hope we achieved that.”