The benefits and limits of personalised health care for Aboriginal and Torres Strait Islander people

The conventional health system, continuing poverty and growing inequality in Australia continue to fail Aboriginal and Torres Strait Islander people.

In 2008 all Australian Governments committed to closing the gap in life expectancy between Aboriginal and Torres Strait Islander and non-Indigenous Australians by 2031. A decade on, life expectancy for our people is slowly increasing. However it is increasing at a slower rate than that of non-Indigenous Australians: the life expectancy gap is therefore widening, not closing [1].

Clearly, something is very wrong here. But what is to be done?

There is no silver bullet, of course, no simple, one-dimensional solution that will magically fix the continuing effects of colonisation on our health.

But an important part of the answer is increased and sustained investment in multidisciplinary models of primary health care, delivered through Aboriginal Community Controlled Health Services (ACCHSs). These services have the capacity to deliver better health outcomes through services better matched to the needs of Aboriginal and Torres Strait Islander clients and communities, including through supporting empowerment at the individual and collective levels.

ACCHSs were established by Aboriginal communities from the 1970s onwards in response to the failure of mainstream services to meet our needs. Under the direction of their community-elected boards, they embodied a new model of service delivery aligned with the holistic conception of health derived from our diverse Aboriginal cultures.

Today, ACCHSs continue that tradition, delivering culturally responsive care which takes account of not just the clinical needs of our clients, but their holistic social and cultural circumstances as well.

Of course, it is important that Aboriginal and Torres Strait Islander people have a choice about which services to access, just as it is for any person. But it is clear that where they are available, Aboriginal and Torres Strait Islander people have a clear preference for the use of Aboriginal community-controlled health services, leading to greater access to care and better treatment outcomes [2]. In 2017-18, Aboriginal community controlled health services had 400,000 clients nationally or 60 per cent of the entire Aboriginal and Torres Strait Islander population across the country [3].

ACCHSs comprehensive model of care goes beyond the treatment of individual clients and is quite different to that offered by most mainstream services, treating those who are sick, as well as running prevention programs and acting to address the social determinants of health.

Aboriginal community-controlled health services are also a powerful statement of self-determination.

They have proved to be highly cost effective, with a major study concluding that programs delivered through ACCHSs deliver fifty percent more health gain to the Aboriginal and Torres Strait Islander population compared to a situation where the same programs are delivered via mainstream primary care services [2].

Aboriginal community-controlled health services are also a powerful statement of self-determination. In rejecting the notion that health is just about the absence of disease in individuals, they provide a platform for addressing the negative health effects of poverty and inequality; of lack of education; of poor housing; of alcohol and other drugs; and of discrimination, racism and dispossession. Individuals alone are relatively powerless when it comes to addressing these social determinants of health but through ACCHSs individuals work together to take collective action through which change becomes more possible.

The history and achievements of Aboriginal community-controlled health services are highly relevant to the increasing focus on personalised health care as a way of improving health outcomes for Australians.

…by aligning their service model with the social and cultural context of their clients, ACCHSs represent all that is best about personalised, client-centered care.

On one hand, ACCHSs are a model of the benefits of personalised health care for Aboriginal and Torres Strait Islander people [4]. By employing local Aboriginal and Torres Strait Islander people, by using a truly multidisciplinary model of care, and most importantly by aligning their service model with the social and cultural context of their clients, ACCHSs represent all that is best about personalised, client-centered care.

On the other hand, ACCHSs demonstrate the importance of going beyond a model of personalised health care based solely on getting individuals to take more responsibility for their own health and for managing their health care.

It is well known that the less control people have over their lives and environment, the more likely they are to suffer ill health [5], that powerlessness is itself a risk factor for ill-health and poor social and emotional wellbeing [6]. The disempowering effects of colonisation, and resulting poverty, dispossession and marginalization, mean that many Aboriginal and Torres Strait Islander people have limited ability to exercise control when interacting with the health system or in trying to change the broader social environment that contributes to their illnesses.

In this context, health systems based solely on maximizing personal choice may actually increase health inequity as those who are already able to exercise choice receive improved services while those least able to do so are left further behind [7].

The recent trial of the National Disability Insurance Scheme (NDIS) in the remote Barkly region of the Northern Territory is a good case study. The NDIS, based on a personalised model of care where the consumer exercises choice and control over their services, proved to be ineffective in the region, with an evaluation of the trial concluding that outcomes for NDIS participants were poorest for those living in remote Aboriginal communities, and worked best for those already advantaged by good English literacy and/or computer skills [8][1].

The ACCHS model empowers our people by guaranteeing their input into decision-making.

Aboriginal community-controlled health services, however, are based on a collective model of control and action. The ACCHS model empowers our people by guaranteeing their input into decision-making. It embeds Aboriginal and Torres Strait Islander employment and leadership across our services. And it gives our communities a collective voice on matters that affect their health. The fact that ACCHSs empower Aboriginal and Torres Strait Islander communities in these ways creates a more responsive health system and contributes to health and wellbeing in itself.

ACCHSs therefore show both the benefits and limits of personalised care, showing how personal choice in health needs to be supplemented and supported by processes of collective empowerment. Such collective empowerment then supports and reinforces the capacity to engage in personalised health care at the individual level. It is this “both/and” rather than “either/or” approach to health care and health gain that makes them so effective.

References

1.      Australian Institute of Health and Welfare (AIHW), Trends in Indigenous mortality and life expectancy, 2001–2015: evidence from the Enhanced Mortality Database. 2017, AIHW: Canberra.

2.      Vos T, et al., Assessing Cost-Effectiveness in Prevention (ACE–Prevention): Final Report. 2010, ACE–Prevention Team: University of Queensland, Brisbane and Deakin University: Melbourne.

3.      Australian Institute of Health and Welfare (AIHW), Aboriginal and Torres Strait islander health organisations: Online Services Report — key results 2017–18. 2019, AIHW: Canberra.

4.      Nuffield Council on Bioethics, Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age. 2010, Nuffield Council on Bioethics: London.

5.      Marmot M, Siegrist J, and Theorell T, Health and the psychosocial environment at work, in Social determinants of health, Marmot M and Wilkinson R, Editors. 2006, Oxford University Press: Oxford.

6.      Tsey, K., et al., Social determinants of health, the ‘control factor’ and the Family Wellbeing Empowerment Program. Australasian Psychiatry, 2003. 11(3 supp 1): p. 34–39.

7.      Malbon, E., G. Carey, and A. Meltzer, Personalisation schemes in social care: are they growing social and health inequalities? BMC Public Health, 2019. 19(1): p. 805.

8.      Mavromaras K, et al., NDIS Evaluation Consolidated Report: Final Report. 2018, National Institute of Labour Studies, Flinders University: Adelaide.


[1] We understand that the National Disability Insurance Authority has recognised these shortcomings and is examining the possibility of more collective, population-level ways of implementing the NDIS in such remote areas.