Issues
Volume 221 Issue 1
Cover photo: The late Dr Lowitja O’Donoghue AC CBE DSG.Photographer: Leanne King.
Editor's choice
Special Issue in partnership with the Lowitja Institute: centring Indigenous knowledges
This Special Issue of the Medical Journal of Australia is in partnership with the Lowitja Institute, Australia's only national Aboriginal Community Controlled Research Institute. This inaugural partnership publication has been timed to coincide with NAIDOC week — with the theme “Keep the fire burning! Blak, loud and proud” — and recognises and celebrates Aboriginal and Torres Strait Islander leadership and excellence in health and medical research. This article is a collaboration between the MJA Editorial Team and the Guest Editors, where we jointly reflect on the thinking and processes behind this Special Issue. Scholarly publishing sits at the core of issues of power, privilege, and the production of knowledge in health and medicine. As Australia's national medical journal, the MJA plays important roles not only in knowledge dissemination, but also in defining, legitimising and validating what types of knowledge matter in health and medical research, practice and policy making. To date, the Journal predominantly operated from a biomedical perspective that has embedded colonial practices, norms and assumptions that produce and sustain inequalities in health and unjust outcomes for Indigenous Australians. This inaugural collaboration between the Lowitja Institute and the MJA stems from the recognition that currently “Indigenous health research in Australia is largely informed by non‐Indigenous world views, led by non‐Indigenous people, and undertaken in non‐Indigenous organisations” (https://doi.org/10.5694/mja2.51757). In embarking on this Special Issue, then, the Journal accepted that the current model of publishing practices has not served Indigenous research and researchers well, and that in fact the Journal has, to some extent, become perceived as unwelcoming. In response to a letter to the editor, submitted by Lowitja CEO and a collective of Aboriginal and Torres Strait Islander researchers (https://doi.org/10.5694/mja2.51281), the MJA began discussions with the Lowitja Institute. This engagement affirmed that a meaningful approach to improve the ethical publishing practices at MJA required that the Journal relinquish control and hand over decision making for this issue to Aboriginal and Torres Strait Islander experts. The Lowitja Institute engaged a panel of Guest Editors who are recognised leaders in the fields of public health and clinical medicine. Guest editors were recently recognised in national awards both by the Lowitja Institute (https://www.lowitjaconference.org.au/awards) and the NAIDOC committee for their leadership and contribution to Aboriginal and Torres Strait Islander health. Guest Editors, along with Lowitja Institute executives, took on the collective care and responsibility of defining the scope and aims of the Special Issue, assessing and selecting its content, determining its editorial requirements, and nominating peer reviewers, with the support of the MJA editorial team. The editorial practices to develop this Special Issue draw on Aboriginal and Torres Strait Islander ways of knowing, being and doing. In this issue, the Guest Editors have held the sovereignty of our voices and experiences all the way, until you have opened and read this today. All care has been taken with the journey of researchers submitting articles to this issue, with collective caretaking of their knowledges. A call for papers was made in October 2023, with content eligible for consideration if it addressed an area of health and wellbeing that is a priority to Aboriginal and Torres Strait Islander communities, was led by Aboriginal and Torres Strait Islander authors (first or last authors), included an ethical research statement that addressed the Consolidated criteria for strengthening reporting of health research involving Indigenous peoples (CONSIDER) statement (https://doi.org/10.1186/s12874‐019‐0815‐8), and described the positionality of the author team. Authors were also given the opportunity in their articles to acknowledge the Indigenous knowledges that informed their work and to include their Language Groups in the authorship line. These practices uphold what Indigenous people have called for in ethical publishing practices (https://doi.org/10.5694/mja2.51281 and https://doi.org/10.1136/tc‐2022‐057702). Guest Editors were not involved in editorial decision making about submissions that they authored. The large number of high quality submissions received in response to the call for papers highlights the extraordinary breadth and depth of Aboriginal and Torres Strait Islander‐led research incorporating our knowledges on all areas of our health and wellbeing. It also demonstrates the importance of relationships and relationship building in this space, including the roles of the Guest Editor team and others in disseminating the call for papers and encouraging submissions to a journal that many authors might not have considered a natural home for their work. The resulting Special Issue contains 12 articles that span a wide range of study designs and topics. The manuscripts have been ordered (while confining to a standard layout) as a narrative, privileging Aboriginal and Torres Strait Islander strengths and providing courageous conversations on system failures that impact the health and wellbeing of Indigenous peoples. The research within covers the life course and pays homage to the late patron Dr Lowitja O'Donoghue AC CBE DSG, who dedicated her life to fighting for human rights of Aboriginal and Torres Strait Islander peoples and worked across many of the fields of health covered in this Special Issue. Owing to time and space constraints, some articles submitted for consideration of the themed issue will be published by the MJA later in the year in a regular issue of the Journal. The first article, a perspective article by Carmen Parter and colleagues (https://doi.org/10.5694/mja2.52352), frames the Special Issue with a discussion of racism and the cultural determinants of health, and ends with a call for “all within the health care sector to take a purposeful journey of learning by walking alongside Aboriginal and Torres Strait Islander people and listening to their knowledges of cultural ways of being, knowing and doing, with open minds and hearts”. An Editorial by Jaquelyne Hughes and colleagues (https://doi.org/10.5694/mja2.52351) asserts sovereignty with the announcement of the Zenadh Health Science Research and Education Council to drive long overdue improvements for the Zenadh peoples. The Council brings together Zenadh experts in diverse knowledges, intellect and skills while drawing from the best of Eurocentric science epistemology. And a research article (https://doi.org/10.5694/mja2.52353) draws our attention to our older Aboriginal and Torres Strait Islander population. With Aboriginal and Torres Strait Islander governance, Odette Pearson and colleagues, provide quantitative evidence to support the multitude of stories told about the failure of the aged care system to care for our elders. They leave us with a determination that we must do better for all our elders, ensuring we do not leave anyone behind. This Special Issue was a deliberate attempt by the MJA to cede editorial decision‐making responsibility to a group of external expert Aboriginal and Torres Strait Islander Guest Editors. For the MJA team, this was a new experience and served as a lesson that ceding power is a prerequisite if progress is to be made in Indigenous health, and is a process that should feel uncomfortable and unfamiliar. For the MJA it was also a specific response to the outcome of the Voice referendum in 2024 (https://doi.org/10.5694/mja2.52074) — a recognition that meaningful change will only come when those in power are prepared to step aside and let Aboriginal and Torres Strait Islander peoples lead their own affairs while supporting where required. Editors are accustomed to being in the position of power, defining a journal's (and for a journal like the MJA, national) priorities, including concepts of research quality and likely impact. At the same time, being open to different perspectives on editorial priorities and practices and being willing to change is fundamental for the sustainability of any journal and its ability to effectively serve the communities that it represents — and wishes to represent. Working with the Guest Editor team to help enact their vision for the theme issue was a hugely rewarding experience for the MJA editors and a reminder that the Western norms the Journal has operated within can be far from the best way of working. The MJA team are deeply grateful for the generosity that the Guest Editors demonstrated in offering their time and expertise to producing this Special Issue. Many of the innovations introduced here will be taken forward by the MJA as we update our author requirements, including encouraging use of positionality statements when submitting work to the Journal. We extend a heartful thanks to all the authors and reviewers who contributed to producing this Special Issue, and look forward to feedback from readers. We hope this is the first of many future collaborations.
on behalf of the MJA Editorial Team
Perspectives
Implementing the cultural determinants of health: our knowledges and cultures in a health system that is not free of racism
Systemic racism and its structural biases and institutional impediments must be addressed to implement the cultural determinants of health
Carmen Parter (Murrana, Juru and Darumbal Clans of Birra Gubba Nation with South Sea Islander heritage from Tanna Island of the Republic of Vanuatu) · Donna Murray (Wiradyuri Wonnarua) · Romlie Mokak (Djugun; member of Yawuru people) · Karl Briscoe (Kuku Yalanji) · Richard Weston (Meriam) · Janine Mohamed (Nurungga Kaurna)
Fulfilling cultural safety expectations in specialist medical education and training: considerations for colleges to advance recognition and quality
Colleges must direct efforts to centre the development of critical allyship to support Indigenous peoples
Paul Saunders
“Simply put: systems failed”: lessons from the Coroner's inquest into the rheumatic heart disease Doomadgee cluster
Queensland Health must act on the coronial recommendations to avoid more preventable deaths in Doomadgee
Avelina Tarrago (Wangkamahdla) · Ella Veit‐Prince · Claire E Brolan
Medical education
Optimisation during transition to dialysis commencement
Social and cultural determinants of health and health care are patient-important factors navigated by many families and communities accessing excellence in health support for dialysis-requiring kidney failure
Paayal Naidu · Onika Paolucci (Muran‐Iwaidja) · Relma Luta (Kaurareg) · Jaquelyne T Hughes (Wagadagam)
Ethics and law
Seeking a voice: the inadequacy of the “four principles” and the need for care ethics in the provision of health care to vulnerable populations
The moral and practical justification for Indigenous representation at all levels of health care provision
Kenneth JE Barns · Louis Peachey (Girrimay/Djirribal)
Editorial
Securing surviving futures: Zenadh Health Science Research and Education Council
The Council aims to secure locally, within the region, Zenadh knowledges, intellect, skills and work by Australia’s leading scientists
Jaquelyne T Hughes (Wagadagam) · Karla J Canuto (Kulkalgal) · Phillip J Mills OAM (Kulkalgal)
Research
Aged care service use by Aboriginal and Torres Strait Islander people after aged care eligibility assessments, 2017-2019: a population‐based retrospective cohort study
It is likely that the care needs of older Aboriginal and Torres Strait Islander people are not being met
Odette Pearson (Eastern Kuku‐Yalanji and Torres Strait Islander) · Tracy Air · Greer Humphrey · Clare Bradley · Noeleen Tunny · Alex Brown (Yuin Nation) · Steven L Wesselingh · Maria C Inacio · Gillian E Caughey
First stroke incidence, causes, treatments, and outcomes for Aboriginal Peoples in South Australia and the Northern Territory: a pilot prospective study
A larger, population-based study of the incidence of stroke in Aboriginal people is both feasible and needed
Angela Dos Santos (Gumbaynggirr, Kwiamble) · Edmund Cheong · Anna H Balabanski · Kendall Goldsmith · Luke Burchill (Yorta Yorta, Dja Dja Wurrung) · James Burrow · Stephen Brady · Ferdous Alam · Mark Parsons · Judith M Katzenellenbogen · Amanda G Thrift · Timothy J Kleinig · Alex Brown (Wadi Wadi)
Kidney transplantation access and outcomes for Aboriginal and Torres Strait Islander children and young adults, 1963–2020: an ANZDATA registry study
Improving transplant access within five years of dialysis commencement should be a priority
Swasti Chaturvedi · Shahid Ullah · Jaquelyne T Hughes (Wagadagam)
Evaluation of the Cultural, Social and Emotional Wellbeing Program with Aboriginal women in the Boronia Pre‐Release Centre for Women: a mixed methods study
Improving their social and emotional wellbeing could help reduce the number of Aboriginal people in Australian prisons by reducing recidivism
Pat Dudgeon (Bardi) · Ee Pin Chang · Joan Chan · Carolyn Mascall · Gillian King (Noongar) · Jemma R Collova · Angela Ryder (Noongar)
Knowledge translation in Indigenous health research: voices from the field
Researchers and institutions should be accountable for ensuring that knowledge translation is embedded throughout the research process
Michelle Kennedy (Wiradjuri) · Melody Morton Ninomiya · Maya Morton Ninomiya · Simon Brascoupé (Anishinabeg/Haudenausanee) · Janet Smylie (Mѐtis) · Tom Calma (Kungarakan, Iwaidja) · Janine Mohamed (Narrunga Kaurna) · Paul J Stewart (Taungurung) · Raglan Maddox (Bagumani, Modewa)
Narrative review
Towards precision cancer medicine for Aboriginal and Torres Strait Islander cancer health equity
Aboriginal and Torres Strait Islander peoples should define safety, benefit and sovereignty in precision cancer medicine research for their communities
Justine R Clark (Adnyamathanha) · Jessica Buck (Kamilaroi) · Amanda Richards‐Satour (Adnyamathanha and Barngarla) · Louise Lyons (Jaadwa) · Alex Brown (Yuin)
News
MJA Special Issue in partnership with the Lowitja Institute
In recognition of National NAIDOC Week, MJA has worked with a team of Aboriginal and Torres Strait Islander academics in a unique partnership that challenges power and privilege in scholarly publishing with the creation of a special issue in collaboration with the Lowitja Institute, Australia’s only national Aboriginal and Torres Strait Islander community controlled research institute. The MJA’s Editor in Chief Virginia Barbour said the issue, which ceded editorial control to Indigenous guest editors, was a specific response to the outcome of the Voice referendum in 2023. “Meaningful change will only come when those in power are prepared to step aside and let Aboriginal and Torres Strait Islander peoples lead their own affairs whilst supporting where required,” Professor Barbour said. Indigenous health researchers have traditionally been marginalised or left out altogether in health, especially medical publishing. “What was clear was that our previous ways of working, by applying Western norms of publishing, has led to exclusion of papers on Indigenous health and more crucially exclusion of Indigenous health researchers,” Prof Barbour said. “The main reason for the issue was my increasing awareness that the MJA as the national journal has the responsibility to publish research that best serves health care in Australia – for everyone.” Professor Barbour said she was keen to work with the guest editors from the Lowitja Institute to reset this approach, not only for this issue, but how the MJA works moving forward. “There is a very long history – in Australia and elsewhere – of research being done on Indigenous people, by white people in ways that were culturally inappropriate. Part of the argument in the past has been that there are not enough Indigenous researchers,” Prof Barbour said. “That is simply not true now - there is a growing community of highly knowledgeable Indigenous researchers - and we have to ensure that it must be the case going forward that research on Indigenous health must be Indigenous led and done with appropriate community engagement.” Paul Stewart is CEO for Lowitja Institute and hails this as a pivotal time for Indigenous health research. “This issue is the outcome of advocacy from our Indigenous leaders who have long called for greater acknowledgement of Aboriginal and Torres Strait Islander people's contribution to research in advancing health outcomes for our mobs,” Mr Stewart said. “Our late co-patron Dr Lowitja O’Donoghue AC CBE DSG often spoke of being courageous when it came to championing research led by our peoples, for our peoples. We thank MJA for providing this opportunity to showcase Blak excellence in health research.” One of the NAIDOC issue’s guest editors, Associate Professor Michelle Kennedy of the Lowitja Institute, said it provided an opportunity to correct historical publishing practises that left Indigenous voices out. “It is a practice that contradicts historical and contemporary publishing approaches in health and medical journals,” Assoc Prof Kennedy said. The Guest Editors were able to give a broad insight into Indigenous health and the perspectives of Aboriginal and Torres Strait Islander academics. “This issue has privileged Aboriginal and Torres Strait Islander ways of knowing, being and doing by providing a safe space for the articulation of these in a senior medical journal,” Assoc Prof Kennedy said. “Our call for papers explicitly called for only the submission of research led by Aboriginal and Torres Strait Islander people, the articulation of ethical practices including community prioritisation and governance through the incorporation of the CONSIDER statement.” Prof Barbour said editors are accustomed to being in positions of power, defining a journal’s priorities, and change should feel uncomfortable to be meaningful. “If it were comfortable and easy, arguably we would already have ceded power. In order for it to be meaningful, we should understand that we should step beyond our usual ways of working,” Professor Barbour said. “We had trust in the Guest Editors in that they understood how to approach publishing in a way that was best for their community. Our job was to facilitate what they wanted to do.” Indigenous voices are important in creating better health outcomes for Aboriginal and Torres Strait Islander communities but haven’t been heard sufficiently in the past. “Aboriginal and Torres Strait Islander voices and perspectives are central to advancing health systems and achieving equitable health outcomes. However, these voices have been silenced in spaces of power to transform and address colonial structures imposed on Aboriginal and Torres Strait Islander people,” Assoc Prof Kennedy said. The Lowitja Institute team took great care in protecting the MJA’s publishing process. “Our Guest Editorial team, consisting of Aboriginal and Torres Strait Islander researchers, clinicians and policy experts have safeguarded the publishing process” Assoc Prof Kennedy said. “The opportunity to draw on collective wisdom and caretaking to create this special issue has been an honour and privilege,” Assoc Prof Kennedy said. The MJA issue has begun the process of changing what happens so often in scientific or medical publishing, to be inclusive, rather than exclusive of Aboriginal and Torres Strait Islander people. “Indigenous people’s knowledges and wisdom have been routinely excluded from practicing and leading in the biomedical health academy,” Guest Editor Professor Jacqueline Hughes said. “The sciences that advance Indigenous peoples exclude Indigenous knowledges, which is a systematic bias…,” “…MJA has undertaken a partnership with Lowitja Institute in which a Guest Editorial team, that has comprehensive capability, can support an editorial process that has not systematically excluded Indigenous Knowledges…,” Prof Hughes said.
Sally Block
Planning for the future, learning from the past
Maria C Inacio · Virginia Barbour
Contextualising the benefits and risks of anti‐amyloid therapy for patients with Alzheimer disease and their care team
Oneil G Bhalala · Jane Thompson · Rosie Watson · Nawaf Yassi
Supporting intersectional mentoring of women in medicine
Pallavi Prathivadi · Naomi MacPherson
Phrynoderma: an under‐recognised condition reflecting nutritional deficiency
Matthew J Verheyden · Vicki Howard · Monisha Gupta
Time to set a standard for the standards: health libraries provide crucial support for Australian medical training programs
Gemma Siemensma · Anna Griffith · Alice Anderson · Angela Smith
Dying of heart failure: how do we improve the experience?
Dominica Zentner · Vithoosharan Sivanathan · Jennifer Philip · Natasha Smallwood
Exploring opportunities to reduce scope 3 emissions in renewably powered health services
Urvi D Thanekar · Martin Hensher · Rebecca Patrick · George Keel · Michael Forrester