” A forum on translating research into policy and practice in Aboriginal and Torres Strait Islander health has outlined priorities for action on evidence gaps across the stages of the life course, from maternal and child health through to older adults.
The NHMRC Translating Research into Policy and Practice (TRIPP) Forum Report outlines the outcomes of a forum held in May 2016 that brought together key Aboriginal and Torres Strait Islander researchers and stakeholders to discuss research translation in Aboriginal and Torres Strait Islander health and to identify evidence practice and policy gaps.”
Download the report HERE final_tripp_forum_report_pcic_approved
The report shows that top three priorities nominated by participants in the area of children’s health were social determinants of health, child safety and protection, and parenting and grandparenting.
For youth, the priorities were wellness, mental health and data and demographics, while for adults, they were access to data and bureaucracy, prevention, primary health care and whole system health.
Themes that cut across all areas included social determinants of health, cultural determinants of health, epigenetics, data and demography, nutrition, health system and services, and transitions between the stages of the life course.
The aim of the Forum was to bring Australian Aboriginal and Torres Strait Islander health researchers and key stakeholders together to:
• Identify evidence gaps and evidence practice and policy gaps, informed by the systematic reviews
• Identify and describe the effectiveness of interventions evaluated in Indigenous Australian populations
• Identify and describe other health questions relevant to Indigenous Australian populations
• Provide advice to the CEO on appropriate courses of action to take.
Structure of Forum report
This report is a record of participants’ contributions against the agenda and set questions. Outcomes are provided at the end of the report. There were a number of other issues raised during the Forum that did not relate directly to evidence gaps in Indigenous health, and these were recorded on the day. ONHMRC will discuss these issues with PCIC.
The stages of the life course were used to identify specific gaps and priorities for Aboriginal and Torres Strait Islander people. This drew upon the whole-of-life approach identified in the Australian Government National Aboriginal and Torres Strait Islander Health Plan 2013- 2023.
The stages used were: Maternal health and parenting; Childhood health and development (birth to early teens); Adolescent and youth health (early teens to mid 20s); Healthy adults (mid 20s +); and Healthy ageing. Priorities were identified in each of these stages as summarised below.
1. Maternal and child health
The top priorities nominated by participants were: pregnancy and childbirth, as well as parenting. Epigenetics and nutrition were tied in third place.
Pregnancy and childbirth is a key area for maternal and child health, and policies should reflect and respect women’s choice to stay in community and to decide who can be present at the birth.
In relation to Parenting, early information to assist families to cope with change is important. Adolescent parenting was recognised as a sub-category also needing to be addressed.
Epigenetics and personalised medicine was identified as the third priority area, particularly the application of new technologies. Epigenetic modifications can be passed from mother to child, with implications for the health of immediate and subsequent generations. Epigenetics was also seen as being an underutilised area compared to its potential.
The issues related to Nutrition included having policies addressing poverty, food availability and food security.
Other issues discussed were:
• Policies and services that support all who ‘parent’
• Families as first teachers (intergenerational, men, communities)
• Indigenous identity and mental health and ‘bullet proofing’ individuals
• Community grounded responses to social and emotional well-being
• Choices around contraception, abortion, infertility (understanding these in an Indigenous context)
• Pre-conception wellbeing (smoking, nutrition).
The top three priorities nominated by participants were: social determinants of health; child safety and protection; and parenting and grandparenting.
Social determinants of health and in particular housing, justice and education were the top priority identified. The need to demonstrate a return on investment was acknowledged.
Participants suggested that the education and health sectors do not come together as much as they should, and noted there is no specific Aboriginal community controlled education sector. Dr Chris Sarra’s work was mentioned. Investment in housing and infrastructure would also lead to improvements in health.
Interactions with community supports, the justice system and incarceration were another focus. Victoria’s Commission for Children and Young People was suggested as an effective model. Participants were concerned that the system can be racist and under-resourced, hence jumps too quickly to finding non-Aboriginal carers. Dissemination to lay people and feedback to community from researchers were also noted as issues.
Child safety and protection – participants identified over- and under-sensitivity to cultural factors as an issue, and questioned whether referrals for at-risk children were being made to the extent needed. The question of who is best placed to decide was also raised, though a lack of information on numbers affected also needs to be addressed. It was suggested that evidence could be collected by community engagement officers. Indigenous specific tools or culturally aware tools are needed.
Parenting and grandparenting – this included identifying evidence for effective interventions; cultural practice; and supporting a family focussed agenda.
Other issues discussed (apart from the top priorities) were:
• Social gradients, clustering and models to overcome intergenerational disadvantage
• Food accessibility and nutrition and whether governments were willing to undertake major interventions to address these issues
• Demonstrating return on investment in child health with targeted interventions and making a case to government
• Ability of mainstream services to respond to needs of Indigenous children (as Indigenous children increasingly do not attend community controlled health organisations)
• Importance of non-health workers to child health (social workers, counsellors).
There was general agreement that an adolescent strategy was required. The top three priorities nominated by participants were: wellness, mental health, and data and demographics.
Wellness included culturally appropriate health care services that meet the health and health care needs of young people (primary and community care), while being culturally and emotionally supportive and safe. It was noted that young people are about 50% of the population of Aboriginal and Torres Strait Islander peoples.
Mental health included a focus on resilience and suicide prevention. Adolescence and young adulthood is a vulnerable period with high rates of incarceration, racism (which affects mental health), and trauma/healing. Out of home care and community models of care were suggested as effective supports.
Data and demographics focused on how existing data can be better used to improve understanding of, and provide insight into, the health and wellbeing (and the health care needs) of young Aboriginal and Torres Strait Islander Australians.
Other issues identified included:
• Impact of youth incarceration, parenting, resilience and education
• Dealing with institutional racism
• Sexually Transmitted Infections – for example, syphilis
• Reproductive health, including teenage pregnancy
• Alcohol and other drugs, such as methamphetamine
• Safe health care settings.
The top four priorities nominated by participants were: access to data and bureaucracy; prevention; primary health care; and whole system health.
Access to data and bureaucracy – while this was also identified as a priority for the Youth stage of the life course, the focus here is better sharing of data, particularly across portfolios, and its use by bureaucrats. The National Aboriginal and Torres Strait Islander Health Implementation Plan principles could be used with linked data to prioritise needs and policy, and identify research gaps and needs. Data was seen as a cross cutting issue across all the stages of the life course.
Prevention – this included risk factors and in particular chronic disease. Linking funding to prevention was also seen as important.
Primary health care considerations included workforce, upskilling and relying less on specialists.
Whole system health was contrasted with the tendency of the Medicare Benefits Schedule and Pharmaceutical Benefits Schedule to compartmentalise. Many Aboriginal and Torres Strait Islander health issues cross sectoral boundaries and in order to ensure good access to services, all areas need to be targeted including government, hospitals, academia, community sectors and communities themselves. Participants suggested that it is not just one discipline or department or disease that needs fixing, but a whole system—working on single aspects in isolation will not work.
Other issues included:
• Employment, which brings not just income but social benefits
• Changing parenting, with more aunties and uncles, parents and grandparents taking on that role
• Food choices including affordability and accessibility
• Socioeconomic factors
• Incarceration of peers, mentors and models
• Recognising that women’s health is not just about maternal health. (Paternal health is also a priority)
• Hospital support, with the number of people leaving before discharge a concern
• Domestic violence.
5. Older adults
Participants discussed what ‘elderly’ means in the Aboriginal and Torres Strait Islander context. They noted that Aboriginal and Torres Strait Islander Elders are not the shy and retiring type—they are active people and contribute greatly to the community. It was agreed that ‘older people’ or ‘older adult’ is the preferred terminology as young people can be recognised as elders.
The top four priorities were: advocacy to navigate the system; palliative care; dementia; and the role of older adults.
Advocacy to navigate the system is about ensuring support for family and community and education and awareness of services. Navigating the aged care system was identified as a priority. Mainstream health services should expand to include a focus on Indigenous older adults.
The Dementia priority included having culturally appropriate models of care, developing tools to measure dementia and having strategies to support people. For example the Kimberley Indigenous Cognitive Assessment tool is culturally sensitive and allows medical practitioners to determine the extent of dementia and other cognitive impairments.
In relation to Palliative care, developing death and dying protocols (for example similar to RACGP’s guidance on palliative care and end of life) was identified as a priority. Issues to cover included dying on country; dying with integrity; and keeping elders at home.
Role of older adults – recognise and value the roles that they fulfil including as carers and in leadership positions. This includes awareness of services for carers, valuing and building the capacity of older adults and hearing their positive stories. An example is utilising elders at times of crisis in Cairns with the Murray Street Kids; and valuing their knowledge of traditional medicine. Gaining resilience from elders and building on positive aspects of community are also important. Participants noted the Scandinavian model, which brings together elderly and youth. Developing models of community aged care, looking at what works, describing the benefits and including yarning, history and law were also identified.
A number of crosscutting themes were identified, such as:
• Social determinants of health
• Cultural determinants of health (language, relationships, identity, place, traditional knowledge, family, culture and kinship)
• Epigenetics and personalised medicine
• Data and demography (how can existing data be better used to improve understanding of, and provide insight into, the health and wellbeing (and the health care needs) of Aboriginal and Torres Strait Islander Australians)
• Nutrition (availability and affordability; food security and supply; making food choices; poverty)
• Health system and services (culturally appropriate services that meet the health and health care needs of Aboriginal and Torres Strait Islander Australians)
• Transitions between the stages of the life course.
While priorities were identified for each of the stages of the life course, some overall actions that would help address the issues were also proposed. These are:
• Evaluating outcomes of programs and policies
• Overcoming gaps with support of family and others
• Education about services
• Having resources available
• Building capacity of ACCHOs to provide culturally appropriate services
• Building capacity of all services in terms of community development
• Providing choices, culturally appropriate care, services, facilities
• Looking at international evidence
• Partnering/collaborating with NGOs, AMS (some good models already exist)
• Undertaking literature reviews to provide reliable evidence
• Having hospital staff who have skills in dealing with Aboriginal and Torres Strait Islander people
• Having culturally safe places
• An Aboriginal and/or Torres Strait Islander trained workforce
• Giving a voice to consumers
• Cultural practices supported in an urban environment
Forum outcome and next steps
• Priorities were identified across the stages of the life course. These will be used as the basis for a broader report on evidence-practice and evidence-policy gaps in Aboriginal and Torres Strait Islander health
• Participants indicated interest to work further post Forum, in the lead up to the 2017 Research Translation Symposium. NHMRC will follow up on establishing small writing groups for each topic
• The writing groups will further refine each of the proposed topics (e.g. why is this topic important, what is the problem, what is the size of the problem, current practices and implications, what are the options, references) to contribute to the report.
The aim of the evidence-policy/evidence-practice gaps report is to:
• Take advantage of NHMRC’s legislated role to provide advice to governments and the community
• Demonstrate how adopting the findings of research could lead to improved health outcomes
• Demonstrate the impact of NHMRC funding
• Raise awareness, celebrate success, acknowledge where there is room for improvement such as care delivered in a manner that not consistent with the best available evidence, and identify research that will address the gap.
Thanks to all participants and Dr Sanchia Shibasaki from Think Through Consultants for her facilitation of the day.