The wide-ranging harms of the deficit discourse that so often dominates public debate, research, practice and policy about Aboriginal and Torres Strait Islander health was highlighted in a report released this week by the Lowitja Institute.
As previously reported for Croakey, the Institute’s Community Priorities into Policy forum, held at the National Museum of Australia in Canberra, also brought the launch of a report calling for more accountable, transparent and ethical evaluation of Indigenous health programs.
Discussions at the Forum also provided a perfect opportunity for some football metaphors, reports UTS scholar and Croakey contributing editor Dr Megan Williams, for the Croakey Conference News Service.
Megan Williams writes:
“Research translation is a transaction” was one of the first comments made to me by Lowitja Institute CEO Romlie Mokak at the #ResearchIntoPolicy Forum.
I felt like it was a phrase I’d been hoping for, to help progress my own thinking and writing about research translation for my justice health research role in Maridulu Budyari Gumal, the Sydney Partnerships for Health, Education and Research Enterprise (SPHERE).
The Forum aligns with a wider movement to ensure more effective translation of research findings into practice and policy; in Aboriginal and Torres Strait Islander health, this movement is informed by our experience of successes and missed opportunities in the past and our critical reflection on the great opportunity there is to improve practice and policy.
Mokak would have seen in his 30-plus years in health and social services the cycle of research into reports onto bookshelves into bins.
Whilst policy may generally reflect gaps identified through research, and provide good frameworks for service delivery based on research findings, there are common barriers to connecting research and policy into action – whether this be service delivery or ‘practice’, community development, education or other types of social change.
These barriers include lack of resourcing, limits to collaboration in real-world settings, almost no evaluation, and no recourse by communities or representative bodies when policies are not met.
Unless, that is, considerable effort is made to change these dynamics. This can and does happen.
But the effort requires resourcing and strategising, and raising the expectations and demands on all of the players involved in policy, research and service delivery. We often hear of government departments being silos; policy, research and service delivery suffer this too.
Learning from the football field
That is why Mokak’s use of the word transaction was appealing. It asserts action, and action across fields or players.
And, at the risk of getting stuck in a football analogy, there have to be solid goals, clear rules and a good post-game analysis.
Fans help too – people willing to champion the cause and get excited. This is not golf, with an individual trying to place a tiny ball in a far-off hole over a mown landscape – but a team effort.
#ResearchIntoPolicy requires a team with a diverse skill set. Researchers often do like communicating, but not always, and not necessarily the type of communications that will convey straightforward messages to the public or the policy makers.
Then there’s the mid-fielder public servants who are in play too, moving around a lot and going between policy writers, executives, administration and researchers. The community don’t have a coordinating, refereeing or commentary role; unless packed into the scrum, they’re out cold and can trail for the season.
Fortunately, a “better luck next time” mantra is rarely used among researchers I’m around. I am connected with the Lowitja Institute through its earlier Cooperative Research Centre for Aboriginal Health in 2007, and instead have mostly heard from colleagues that “we can do better”.
This is on two counts –“we will do better next time, learning the lessons of the past”, and “we already offer something better”.
I touched on this “Aboriginal researchers offer something better” theme in my preview article for the #ResearchIntoPolicy Forum. The ethical principles, capacity building commitments and partnerships between communities, service providers and policy makers are, dare I say it, our ‘norm’.
But more policy impact is always desired. Not just more impact of research into policy, but also more impact of policy to improve health and wellbeing, and therefore policy into research – to assess the effectiveness and improve accountability of policy to achieve what it says it will achieve.
Beyond the disconnect
The question of “Where is the disconnect?” (between research, policy and practice) came up at the Forum in all three presentations, as well as Mokak’s introduction and conclusion, and Rapporteur Geoffrey Richardson’s critical contribution.
And Richardson would well know – he describes himself as a lifetime public servant and has engaged in some of the most challenging policy and program situations any in the room would have experienced. His insights and summary were superb – as described further below.
A presentation by the University of Melbourne’s Professor Margaret Kelaher, launching An Evaluation Framework to Improve Aboriginal and Torres Strait Islander Health with Joanne Luke, Angeline Ferdinand and Daniel Chamravi, outlined several disconnects.
These included: lack of transparency, with only five percent of tender documents and 33 percent of evaluation reports being publically available; ethical principles of programs not being effectively conveyed or reflected in the way evaluation is undertaken by researches external to the local context; and reports making unrealistic recommendations for the future.
The report calls for tender documents, evaluation reports and responses to evaluation to be stored on a publicly accessible database, and for capacity building, including for researchers and community members to co-design and be partners in evaluation.
It also recommends evaluations reporting against a set of nationally recognised ethical principles relevant to Aboriginal and Torres Strait Islander peoples.
These things can all come together well. The presentation made in the evaluation session by Fran Eades, Noongar woman from the great southern region of WA, highlighted how partnerships enable these principles to be realised.
Eades has worked in health care for over 30 years, including in clinical practice, community service and research. She is instrumental in encouraging Aboriginal and Torres Strait Islander community members to participate in and lead research, overcoming its moniker as “a dirty word”.
She now has a role with Derbarl Yerrigan Health Service Aboriginal Corporation, which is a case study in the Developing Evaluation Frameworks report. Eades described how evaluation has been embedded in a heart health program operating since 2008, as a partnership between the National Heart Foundation, Curtin University and the Royal Perth Hospital and Derbarl Yerrigan.
She said: “That program has just gone from strength to strength but right at the outset, the importance of evaluating what’s done was really important and it’s ongoing.”
For Eades, participation in the Lowitja-funded Evaluation Framework project was also valuable, and the University of Melbourne team “reinforced that we are on track”.
This strengthened their confidence in their program, “having set up this program at a community-controlled health organisation, somewhere where it is very familiar for people and where a lot of our people feel comfortable, engagement levels have just been fantastic”, compared to the lower levels of engagement in mainstream hospital and health service settings in the past.
Also, Eades said: “It has reinforced to us the importance of continuing to evaluate the impact of that program for the community because we know how important cardiac rehab programs are.”
This is a useful model to carry forward in the design and delivery of health services, showing how large mainstream services can work effectively with Aboriginal and Torres Strait Islander community-controlled services to improve their accessibility and cultural sensitivity and meet the needs of local populations. This is something mainstream services often find challenging.
And interestingly, while the new report focuses on evaluation, it also provides unique case studies and important insights for health planning in the future.
Forums like these also have spin-offs. I listened in on a chance meeting between Margaret Kelaher from the University of Melbourne and Grant Frost from the Department of Prime Minster and Cabinet.
They both had questions about how researchers and policy makers can work better together, how researchers and evaluators can make clearer messages for policy makers, and what policy makers need to support their work.
The other spin-off from the forum was helping identify core disconnects – the underlying factors in why “billions of dollars has been spent and nothing is improving”, as said by presenter Scott Gorringe from organisation Murri Matters.
As explored in the Deficit Discourse reports and presentation, there is a sense that Aboriginal and Torres Strait Islander ways of doing research and service delivery are not trusted, are invisible or seen as “less than” and are therefore not invested in.
But forums like this, and the efforts of the Lowitja Institute, including through their book Changing the Narrative, have been instrumental in challenging the discourse thus far.
Focus on strengths
Strengths-based approaches are an essential part of changing the narrative from a deficit discourse.
But a focus on strengths also brings with it risks, as was explored by presenters of the Deficit Discourse project funded by the Lowitja Institute – Dr Hannah Bulloch, Research Fellow at the Australian National University’s National Centre for Indigenous Studies (NCIS) and Scott Gorringe from Murri Matters.
Risks are not often mentioned with strengths-based approaches to improving health. But, a focus on strengths can distract from addressing underlying social inequality and structural determinants that produce poor health.
As well, strengths-based approaches can put too much responsibility onto individuals and communities to themselves fix health issues that are social or structural in origin, with a sense of blame arising when this does not occur.
Interestingly, despite strengths-based approaches being advocated for decades, the theoretical and research base is lacking.
The joint Lowitja and NCIS publication, Deficit Discourse and Strengths-based Approaches, released at the Forum together with another new report, Deficit Discourse and Indigenous Health, provide key contributions to framing a way forward, to guide policy makers, as well as researchers and service providers.
But, as recognised at the forum, this is not a given.
Deficits and negatives have a particular power in Australia, in which the history of the country prior to 1788 remains relatively hidden; invisibility and denial produce a toxic discourse and effect on health.
Even talking about it is disheartening; as experienced Aboriginal and Torres Strait Islander health and social scientists, program managers and service providers, we desire progress.
But it is the people who don’t have the lived-experience of invisibility and marginalisation we have to reach, and teach.
In going about our work, presenter Scott Gorringe challenged us to develop a better understanding of “the dance of power”.
He asked: Where do we give our power away? Where do we assume or take power? How conscious are we of it? How can we become more conscious?
Hence my remembering of Romlie Mokak’s opening remark to me that morning – that research translation is a transaction.
Research translation fits within a broader umbrella of knowledge exchange, and exchange itself denotes transaction.
But there is something more to the “action” word in transaction that I feel more of a sense of power from.
It might sound business-like too, or managerial or shrewd, but perhaps more of that power, in my small justice-health research and policy advocacy domain anyway, might help make progress.
In this interview, Scott Gorringe describes his work supporting and challenging people to see their unconscious biases.
He has witnessed profound transformations and improvements in the way Aboriginal and Torres Strait Islander people are understood, respected and trusted – and even describes this highly-sensitive process as “fun”, because of the positive gains people make in their relationship to themselves and others.
Strength through humility
The underlying tone of strength through humility continued into the presentation by Professor Kerry Arabena about service integration to improve Aboriginal and Torres Strait Islander early childhood development.
Arabena, Chair of Indigenous Health and Director of the Indigenous Health Equity Unit at the University of Melbourne and a descendant of the Meriam people of the Torres Strait, drew on her long history working among Aboriginal and Torres Strait Islander services and communities, and demonstrated how relationships are key to breaking down silos.
Picking up on the theme of deficit discourse, Arabena also warned against labelling service users.
In designing strategies for promoting service integration, Arabena reflected briefly on her experience as a blood-borne virus educator two decades ago and the more common use of peer research then.
Peer-research about blood-borne viruses is supported by a vast evidence base but is relatively scarce in Indigenous health research, with the Indigenous health research standpoint being more about more overarching co-creation and community-driven approaches more generally, and peer-research arguably being understood as a specific data collection method.
The conversation below between Indu Balachandran from the National Centre for Indigenous Excellence in Redfern, NSW, and Arabena, demonstrates how peer research generates greater engagement of community members in services, as well as better identification of needs and solutions, and more immediate responses to needs.
It tells the story of service integration to improve early childhood health and wellbeing, particularly by supporting parents.
Recognising research leadership
The themes of humility, strengthening parents and addressing determinants of health also rang through in the announcement of the 2018 Research Leadership Award winner.
This Award occurs through a Cranlana Programme and Lowitja Institute partnership, and went to Associate Professor Ray Lovett, NHMRC Research Fellow and Aboriginal and Torres Strait Islander Health Epidemiology head from ANU College of Health and Medicine, and a Wongaibon man.
Although Lovett could not join the Forum in person, he expressed his gratitude through a video presentation and highlighted the contribution of many community members and organisations to his research, to whom he said the award also belonged.
Taking research to the next stage
Forum rapporteur Geoff Richardson was well-known to several in the room, including Lowitja Institute leaders.
He admitted he had to look up the word “rapporteur” to see what it meant, but even if he wasn’t so comfortable with term at first, he showed great skill in not only summarising what speakers had said, but also applying his own experience into clear instructions for us on how and who to be, “to take us to the next stage”.
This experience as a listener of being trusted, respected and invested in with knowledge from Elders puts me in my place as a younger researcher in the most instructive way, helps me know my role, reminds me that many Elders and leaders are tuned in, and know and sense what is required.
I certainly need that – especially when talking about deficit discourse.
The deficit discourse is an everyday experience – the assumption that my Aboriginal family and culture is a taker not a giver, is needy not needed, is a cost not a benefit.
Richardson reminded us that deficit discourse is “a mindset embedded in a power dynamic” and that it “keeps us in a service delivery paradigm” where our First Peoples are problems to be fixed, to be developed.
He had witnessed how terms such as “normalisation” and “advancement” set western society as the benchmark to which Aboriginal and Torres Strait Islander people should aspire, and this is despite grave concerns too for the health and wellbeing of western society.
Thankfully Richardson encouraged us that there are relatively simple strategies for changing the narrative from deficits: “We must avoid prescribing solutions,” not going to communities with programs in mind and asking if they want them. This is about ensuring “communities decide for themselves”, otherwise “this is part of the deficit mindset, even though it might be well-intentioned”.
Richardson expressed concern at the rhetoric of whole-of-government, coordinated care, rather than cooperation being invested in, including better understanding the inter-dependencies that occur in systems.
He encouraged us to “treat communities like a system and take interconnected parts and the relationships, and understand the strengths, weaknesses, opportunities, threats”. On this, he said for Aboriginal and Torres Strait Islander people, the phrase “it takes a whole village to raise a child is ‘literal’” and everyone in the village has a role.
In a genuine tone, Richardson expressed some concern at sounding controversial, I think because he wanted us as an audience to understand, rather than feel alienated.
But he sincerely worries, that “If an Aboriginal service delivers a service in a passive way, the result is passivity”.
He has seen the benefits of genuine community-control and family-control and the agency people display when they are self-determining needs and solutions. He warned us against “carrying the can for racism” by not pursuing self-determination, and by enabling silos and the status quo.
Richardson urged us to use the wonderful relationships we have in our lives, and encouraged people in the room to keep discussing “how can we apply these learnings into real life?”
He wants us to go the distance – change the discourse – and push for viable place-based approaches that aren’t program-centric but are about people, to take us to the next stage.
Watch the interview below
Romlie Mokak introduces the event Professor Margaret Kelaher and Ms Fran Eades
Dr Hannah Bulloch and Mr Scott Gorringe
Professor Kerry Arabena Discussions and feedback
• Further reading – The Croakey Conference News Service report from #ResearchTranslation17
Warm thanks to all tweeps
The Twitter analytics can be seen below, and the Twitter transcript is here.