Be a Voice for Generations
‘The Reconciliation Week theme for 2023 is “Be a Voice for Generations”,’ notes Narrunga Kaurna woman Adjunct Professor Janine Mohamed, CEO of the Lowitja Institute. ‘Our ancestors have been researchers for 60,000 plus years. We survived the ice age. We were here before the pyramids were built. That capacity to survive and flourish came about through us having brilliant scientific minds based on evidence and curiosity.
‘For too long research was done on us and about us, often in deficit discourse. Now research is done by us for us at the Lowitja Institute,’ Janine says. ‘By working with our people and our ways of knowing, being and doing, we grew the critical mass of Aboriginal and Torres Strait Islander researchers. And now we see funds like the MRFF coming about and acknowledging that need.’
Include Indigenous knowledges in health and medical research
Indigenous knowledges are now included in health and medical research agrees Gugu Badhun Elder Professor Yvonne Cadet-James. She says funders recognise Indigenous knowledges alongside Western science. They give First Nations researchers their rightful place as chief investigators.
‘When the research space is inclusive, you have deeper understanding because it comes from the two different world views. Indigenous research investigators make sure the research has meaning for and benefits our people. This gives the research a better chance of success.’
Use Indigenous research methodologies
Indigenous research methodologies are another achievement. Yvonne says, ‘when I first started out, there were few Australian scholars writing about Indigenous methodologies. Now we have this great library of literature by Indigenous scholars providing that framework. We also have the National Health and Medical Research Council’s Ethical conduct in research and Keeping research on track guidelines. Many organisations have their own guidelines informed by Indigenous scholars now.’
Wiradjuri woman Associate Professor Michelle Kennedy uses Indigenous knowledges and methodologies on the Gulibaa Project. To help pregnant First Nations women quit smoking, Michelle is developing Indigenous-led evidence on culturally safe and meaningful smoking cessation care in partnership with Aboriginal communities.
Michelle led a national survey of Aboriginal and Torres Strait Islander women published in the Medical Journal of Australia. She asked women about their smoking and quitting experiences and what help they want to be smoke free.
‘Our women are motivated to quit smoking,’ Michelle found. ‘They are interested in smoking cessation programs that can empower them to be smoke-free. Programs should acknowledge the strength and resilience of Aboriginal and Torres Strait Islander peoples and cultures and combine this with evidence-based approaches. Aboriginal communities are also calling for health research that addresses racism and the legacy of colonisation and dispossession which continues to affect our health and wellbeing.
‘For this reason, the Gulibaa Project combines behaviour change techniques with Indigenous ways of knowing, being and doing in a group-based program. Workshops incorporate cultural practices such as weaving while learning and processing health education on smoking effects, nicotine addiction and smoking cessation supports.
‘We Aboriginal women care about our babies. We are inherently strong and connected women, so we want to celebrate that while empowering smoke-free pregnancies. Smoking cessation hasn't been done in that way before,’ Michelle tells us.
Growing evidence that culture is a protector and enabler of First Nations health and wellbeing supports Michelle’s approach. By contrast, racism and the colonial-settler culture have negative impacts. These negative impacts could cause nearly 50% of the gap in First Nations health outcomes.
Work with community partners
Michelle also found First Nations women want group-based support from Aboriginal health workers at their Aboriginal medical service to help them quit smoking. To meet this need, Michelle’s team is co-designing the group-based quit smoking model with Aboriginal medical services. They will roll out the program across NSW.
‘The program needs to have flexibility. Aboriginal medical services are community controlled, so every service is different,’ Michelle says. ‘It's important to allow communities to drive the solutions that work for them. We're here to try and support the process and evaluate it to build our evidence base.’
Enable each community to shape health and medical research for their community
Yvonne agrees each community needs to shape health and medical research for their community. ‘Every community has its own historical, social, and cultural perspectives that inform their thinking,’ she says. ‘What works in one community is not going to work in another.’
To help communities shape research, Yvonne provides research workshops to Indigenous organisations and Traditional Owner groups. ‘Issues can arise in research because some Aboriginal and Torres Strait Islander people don't understand the Western research process,’ she explains. ‘It is important that we start building that understanding.’
Fund communities to lead research
Yvonne would like to see funds set aside for communities to initiate and shape research. This approach could allow communities to do research at whatever level suits them. ‘Traditional Owners might be too busy to lead the research, they might prefer to be partners. If the research process involves them in decision making, they don’t necessarily need to be the lead investigator,’ Yvonne says.
Torres Strait Islander woman Dania Ahwang is CEO of the Wuchopperen Health Service in Cairns. Dania agrees the ideal research model is for researchers to work for the community. This allows the community to define the research. ‘At Wuchopperen we've got a diverse community who trust us. They come here because it's a safe place where we value and respect their cultural connections and integrate them into our health services.’ Researchers regularly ask Wuchopperen to participate in their projects so they can access this community. Wuchopperen weights the decision about participating by the benefits the project offers to the community.
‘Much of the research in Indigenous health is about working on Aboriginal and Torres Strait Islander peoples and their health issues,’ Dania explains. ‘We are moving towards working with Aboriginal and Torres Strait Islander peoples. Our longer vision is for Aboriginal and Torres Strait Islander community people to lead research. Our focus is on building community to be able to define and lead those research activities moving forward.’
The Lowitja Institute already funds communities to lead their own research projects. Janine says this decision followed research showing university-led research did not reflect community priorities or benefit communities, Indigenous workforce capability and growth or Indigenous businesses. ‘Our membership asked us to build Indigenous, community-based researchers. For us that meant the communities had to have the research funding and contracts. This has been successful. All our funding contracts are with Aboriginal and Torres Strait Islander organisations. Aboriginal and Torres Strait Islander researchers lead the projects. The downside is that our organisations don’t get the top up from government that the universities receive from research dollars.’
To translate research and make change, start with the community
Translating research to make change is a ‘pretty straightforward’ process, Michelle emphasises. ‘You've got to have all the people with a stake in the game involved and make knowledge translation an iterative process.’ Michelle’s team translates research from the start of the project. ‘We're able to feedback results while they're in process and ensure the results are meaningful and all stakeholders feel ownership of it. Working in this way is crucial to making research impactful and of benefit to Aboriginal and Torres Strait Islander peoples.’
Yvonne agrees communities should be involved in research translation. ‘It doesn’t work to focus only on national policy. Communities are best placed to decide how translation works at the local level.’ A better model is for researchers to build the costs of research translation into their research budget. They should include enough funding for the community to drive the research translation. ‘That will have the most bang for your buck. Because it's local and the people themselves are driving it, there will be better long-term sustainability,’ Yvonne tells us.
Change health and medical research systems
The National Agreement on Closing the Gap set 4 Priority Reforms in 2020. ‘The priority reforms are all about systems reform,’ Janine says. This is because it’s not enough to simply include First Nations peoples in existing systems. ‘The notion of equality has been that we give everyone the same and then we’re meant to get the same outcome. But historical truth telling reminds us that Aboriginal and Torres Strait Islander peoples had a fraught past in this country. We were locked out of lots of systems. To make the outcome equitable for everyone, you have to give people what they need. That means understanding their journeys and meeting people at the organisations they’re at. It means you have to value things differently.’
For example, the MRFF’s Expert Advisory Panel for the Indigenous Health Research Fund, which Janine sat on, ‘still has to work in a colonial apparatus.’ Changing this means changing how the fund operates. It means setting research priorities with First Nations communities. ‘When you value Indigenous peoples, you see systems change. You would see our people working in the MRFF and holding positions of leadership where they have power to make change. You would see different impact measures that are co-created with Aboriginal and Torres Strait Islander communities. Assessment criteria would not just be about publishing in academic journals. It would be about the years a researcher spent in a community and the impact they had on policy and outputs that were important to that community. You would also see a focus on the growth of our Aboriginal and Torres Strait Islander health research workforce. Those are surface level things you could change at the MRFF to get a higher uptake of Indigenous-led research projects.’
Dania is a member of the MRFF’s Consumer Reference Panel and was an assessor of mental health research applications to the MRFF. Like Janine, Dania says it is critical to incorporate First Nations community values. ‘I've learned a lot being on MRFF panels with people who are heavily embedded in research,’ Dania reflects. ‘I think it's also good for them to hear our experience with research projects from the receiving end. So, I can bring that perspective. It's about not forgetting that there is a community that is a very important component of research. It's not just about the value for the researcher that gets the thesis completed or the university that gets the recognition. Is it of value to the community?’
Use health and medical research to improve the health of First Nations peoples
Janine, Yvonne, Dania and Michelle are passionate about making a difference for their peoples through health and medical research.
Janine is driven by the need to ensure that health services and health research are culturally safe. ‘Too much harm has been done to our peoples in places that are meant to provide healing and care,’ she says.
Yvonne became a researcher after working as a registered nurse and midwife. ‘My lived experience is seeing a lot of our mob die too young. Intergenerational trauma, racism, and social determinants cause this. I have put my effort into improving our health and wellbeing.’
‘Significant female family figures working in health as nurses’ influenced Dania. ‘My career aspiration has always been to work with community and for community. Following in the footsteps of my mothers seems to be my destiny.’
‘I have complete freedom to see something we need to address in our community and bring those parties together and fix that,’ Michelle enthuses. My grandfather always told me to be of service to my community. This job allows me to do good things.’
Photograph: Associate Professor Michelle Kennedy (left) with Gulibaa Project research assistant and 3rd year medical student Tanika Ridgeway, Dr Jessica Bennett and her son Artie.