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Holding that space: game-changing kidney project has ‘research activism at its core’

Introduction: A project that aims to transform Indigenous kidney health and healthcare is being led by Aboriginal kidney patients in a unique and trusting collaboration with doctors, nurses, researchers and healthcare providers. 

The Adelaide-based Aboriginal Kidney Care Together – Improving Outcomes Now (AKction) project is founded on long-term relationships, a shared determination for systemic change, and recognition of the need for Aboriginal and Torres Strait Islander leadership, autonomy and governance.

This article is the first in a two-part series sponsored by AKction, and edited by AKction chief investigators Dr Kim O’Donnell, a Malyangapa/Barkindji woman, and Kelli Owen, a Kaurna, Narungga and Ngarrindjeri woman.

Readers are advised this series mentions people who have passed; we publish their names and photos with permission, respect and acknowledgement of their legacy as kidney warriors.


Croakey Professional Services writes:

In a small room at the University of Adelaide, the key members of a ground-breaking kidney research project are meeting amid much emotion as they balance many long-term health issues and life stresses with the additional disruptions of the COVID-19 pandemic.

The eight Aboriginal patient experts coming together with their research colleagues are part of the reference team for the Aboriginal Kidney Care Together – Improving Outcomes Now (AKction) project.

The team includes Inawinytji Williamson, a Pitjantjatjara/Yankunytjatjara Elder, renowned artist and Keeper of the Seven Sisters Dreaming story, and prominent Ngarrindjeri and Yorta Yorta health campaigner Nari Sinclair, known for “chasing down politicians” in her wheelchair.

They take turns to hold a message stick, designed by Kokatha and Mirning artist Micky Barlow, that is a crucial part of their research journey which began in this unique collaboration three years ago.

As they talk about what is going on in their lives, they laugh, cry, share artwork, joke and juggle babies.

Then, as always in these meetings, they hold a minute’s silence for those in their families and communities who have passed away, including Alice Abdulla and Matthew Hobbs, two members of their small team who passed from kidney disease since their work together began. They pay their respects also to other members who have passed (they do not have family’s consent to name them here).

“That minute’s silence reminds us why we’re doing this work…it keeps us grounded in our purpose,” says Dr Kim O’Donnell, a Malyangapa/Barkindji woman and health researcher who is leading the Adelaide-based AKction2 project.

“We have a lot of Sorry Business,” she says of the team. The photograph below includes the late Matthew Hobbs, who was a powerful advocate for kidney care and action. It is published with the permission of his family.

Back from left: Ramon Gadd, Jared Kartinyeri, Kelli Owen, Rhanee Lester. Front from left: Inawinytji Williamson, Nari Sinclair, the late Matthew Hobbs, Lily Neville. (Photo from 2019)

Window of opportunity

All of the Reference Team members, who range in age from three years old (accompanied by his mum) through teens to their early 70s, are either on dialysis, have had kidney transplants or are awaiting transplants.

But, as one of their research themes declares, they are all “much more than our disease” and are now playing key leadership roles in AKction, an action research project that is being hailed as a “game changer” for Aboriginal and Torres Strait Islander health research.

For O’Donnell, that regular minute of silence held at each meeting is also a reminder of the many competing drivers for the research which is being funded over the next four years by a $2 million Ideas Grant from the National Health and Medical Research Council.

On the one hand, she says, its work is driven by urgency: the critical need for better care for Aboriginal and Torres Strait Islander people, who suffer very high rates of chronic kidney disease and die from it at four times the rate of non-Indigenous Australians.

Adding to that is a sense that there is currently a “window of opportunity” for change in Aboriginal and Torres Strait Islander kidney health, so long needed, through the creation of the National Indigenous Kidney Transplantation Taskforce (NIKTT) and development of national guidelines for the management of chronic kidney disease for Indigenous people.

But O’Donnell is also driven by the need to create a culturally safe space, “a Blak space”, for the AKction Reference Team that provides connection and healing for its “patient experts” and re-empowers them to challenge and change the health system, with the support of trusted and respectful non-Indigenous allies and activists.

“It does take time for relationships to build, and then sometimes there’s the voice inside your head saying, ‘we don’t have that time, our people are dying’,” she says.

“You’re trying to get as much traction as you can but at the same time we have to hold that space, to ensure we do it our way,” she said, emphasising the need for shifts in power, to step away from “that top down approach to research” and into a deep sense of Indigenous “knowing, being and doing”.

“It has to be ethical, it has to ensure voices are heard…we have to bring back words like self-determination and sovereignty and be strong in bringing those words into the academic space and keeping them here.”

Celebrating resilience, kinship and the next generation.

Beginnings

AKction began in 2018, funded as a Health Translation SA (HTSA) project, led by non-Indigenous researcher Dr Janet Kelly at the University of Adelaide and supported by the  Medical Research Future Fund (MRFF) Rapid Applied Research Translation initiative.

But it was already many years in the making, building on relationships formed over decades between Elders, community members, clinicians and researchers, many of them “movers and shakers” in their areas, and reuniting kidney patients with their specialist doctors and nurses, though this time all at the same table.

Kelly and O’Donnell met in 2005, became friends as students and have worked together on research projects since, including the Lowitja Institute funded Managing Two Worlds Together project. This started in 2008 to identify the challenges, distress and dislocation experienced by many Aboriginal patients in regional and remote areas who are forced to travel away from community and Country for biomedical health treatment. A set of patient journey mapping tools was co-developed to identify gaps in care and responsive strategies.

Those complex journeys continue to impact on Aboriginal and Torres Strait Islander people, Kelly said, noting that, at the first AKction stakeholder meeting in 2019, the Reference Group’s first set of priorities were not about clinical issues, but problems with transport and accommodation, and later on workforce.

The AKction team had mapped the patient journey issues graphically (see this map of distressing patient journey) for their colleague Alice Abdulla, who passed away just before the 2019 meeting.

“Everyone was really feeling her loss and were determined to make sure this sort of journey doesn’t happen again,” Kelly remembered.

The main focus of AKction in its first phase was around bringing together community members, patient journey mapping, and conducting community consultations in Adelaide, Port Augusta and Ceduna that fed into the national Indigenous kidney care guidelines.

The team worked closely with Kidney Health Australia and NIKTT to drive national reform, while also feeding back into clinical practice within renal care in South Australia. That has included the establishment of two kidney dialysis chairs —  which they hope to have named in memory of Alice Abdulla and Matthew Hobbs — set up at the Kanggawodli Aboriginal hostel, the only Aboriginal hostel in Australia to have dialysis treatment onsite.

Now its scope has expanded dramatically through the NHMRC funding for AKtion2, which has, the team says, “flipped” the Western research model and embedded “purposeful decolonisation”, self-determination, power shifting, and data sovereignty at its core.

Nari Sinclair and fellow Reference Team community members Kelli Owen and Rhanee Lester are now chief investigators, alongside O’Donnell and Kelly, non-Indigenous South Australian nephrologist Dr Samantha Bateman and Professor Josée Lavoie from the Indigenous Institute of Health and Healing at Canada’s University of Manitoba.

AKction 1’s clinicians and researchers, including non-Indigenous nephrologists Dr Stephen McDonald and Associate Professor Shilpa Jesudason, Torres Strait Islander senior researcher fellow Dr Odette Pearson, a health services and epidemiology researcher , and nurse academic Melissa Arnold-Chamney, have taken up support roles as associate investigators.

Stylin up to shake up kidney care: Dr Kim O’Donnell, Uncle Eddie Peters and Dr Odette Pearson

Address systemic racism

Jesudason is the former national clinical director at Kidney Health Australia and chair of the Clinical Research Group at the Royal Adelaide Hospital’s Central Northern Adelaide Renal and Transplant Service (CNARTS). She has been closely involved with the AKction team since before the project began, including as doctor to a number of the Reference Team members.

She sees the securing of the NHMRC Ideas Grant as “an extraordinary achievement by Kim and Janet and the team” in a cut-throat competitive research environment and recognition of AKction as an exciting model for embedding change in health services and systems.

Jesudason says the AKction community members may not all fit “the traditional Western definition of researchers, but of course they are researchers because they ask questions and they want answers and they can work with community to be able to provide those answers.”

“It gives their expertise the appropriate respect and recognition, it’s a game-changer for Aboriginal research,” she says.

From her perspective, AKction’s success and impact has been grown through “a lot of hard work, a lot of trust” by all involved in the project, through shared understanding of the importance of Aboriginal leadership, autonomy and governance and of learning that “it’s not up to non-Indigenous people to vet what is an important issue for Aboriginal people or not”.

Like other team members, Jesudason has long shared concerns that Aboriginal and Torres Strait Islander people are more at risk of chronic kidney disease, for a range of complex reasons including the long-term impacts of colonisation and racism, intergenerational trauma, low birth weights, diabetes, obesity, and high blood pressure.

Just as worrying is the lack of access to care for many complex reasons that include interpersonal and institutional racism. Aboriginal and Torres Strait Islander people have rates of dialysis five times the non-Indigenous rate, but they are ten times less likely than non-Indigenous patients to be added to the waiting list for a kidney donation transplant.

Aboriginal and Torres Strait Islander people are also too often “crash landing on dialysis”, says Jesudason — only diagnosed when they are already in kidney failure, rather than having access to early, long-term, preparatory care in the leadup to the need for dialysis.

That’s a shock in itself, but for many Aboriginal patients, it means they have to move away from their homes and communities “and sometimes never go back…a terrible outcome”.

And it leads to high mortality rates among young Aboriginal and Torres Strait Islander people that Jesudason says would be regarded as a “catastrophe” for non-Aboriginal people but is accepted in a healthcare system where the gaze is too often on whether patients are ‘compliant’ versus whether the system provides proper and culturally safe care.

Both-ways accountability

For O’Donnell, AKction 2 is “research activism at its core”, which ensures that its patient experts are paid and respected for their expertise and given a safe space in which to work.

As well, their issues and recommendations are “not left on a shelf”, as so often happens with research, but listened to and acted upon by allies who have power and influence in the system.

“We’re operating like a kinship family,” she said, describing the “continuous loop” between the Reference Team and the Research Team, so that when an issue is raised about care, a response can come immediately and be relayed back to the group.

But their sights are higher than everyday care issues. O’Donnell wants to be able to hold hospitals and health services accountable for their care to Aboriginal and Torres Strait Islander people nationally by measuring them, for example, against a matrix for identifying, measuring and monitoring institutional racism within public hospitals and health services