Failing to close the Indigenous data gap with the Australian Health Survey

Indigenous Australians under 18 will not be included in the sample collection components of the Australia Health Survey. k-girl/Flickr

The Australian Health Survey’s (AHS) exclusion of data from the Indigenous population raises questions about how serious we are about closing the health gap.

It’s generally accepted that clinical care and health service delivery should be based on the best available evidence of needs, options, outcomes and cost effectiveness. Documentation of processes and outcomes and transparency of decision making are also increasingly emphasised.

This acceptance has been happening at the same time as a growing appreciation of the early life determinants of lifelong health and the potential for early prevention and intervention to mitigate adverse outcomes.

These principles are particularly relevant to Indigenous health because the strategies required to “Close the Gap” between the mortality of Indigenous and non-indigenous Australians depend on knowledge of the determinants and markers of health disparities.

Such strategies also require an appreciation of the great heterogeneity of indigenous health by region, remoteness and socioeconomic status, which, in turn, will drive resource allocation for targeted, needs-based interventions.

But all these principles have been abandoned in the design of the Indigenous component of the unfolding Australian Health Survey.

The Australian Health Survey

That survey is the first-ever attempt to gain a snapshot of the nation’s health through administration to consenting volunteers of a questionnaire, measurement of body size and blood pressure, and testing of blood and urine samples for common markers of nutrition and risk for, or presence of, common diseases.

The diseases being tested for include chronic conditions, such as diabetes and kidney and cardiovascular diseases, which are among the most pressing health problems in the world. They have their origins early life and are appearing in epidemic proportions among Indigenous people.

On the advice of several external bodies to the Australian Bureau of Statistics, Indigenous Australians (although what defines “Indigenous” for the purpose of this exclusion is undisclosed) under the age of 18 years, who constitute up to half the population, will not be included in the sample collection components of the survey.

So we will gather no information on the deficiencies, toxicities, burden of infections or chronic disease risk in the group that can best inform us of disease genesis, and at a point when the problems have the best potential for remediation.

One of the reasons for excluding data from Indigenous Australians in the AHS may be the remoteness of many Indigenous communities. G-Woman

Further, in an earlier phase of the design of the AHS, Indigenous people were to be selectively excluded from (not told of) the opportunity to voluntarily contribute samples of blood and urine to a national repository, which would be available for future testing as new questions arose.

Although this “sample storage” component of the survey has now been abandoned for the entire population, due to logistic and cost issues, this doesn’t cancel the illegitimacy of the decision itself.

Why exclude?

The grounds for the exclusion are not entirely clear, and have not been explicitly outlined in responses to enquiry. Insufficient time for community consultation has been cited, and additional reasons might include:

  • reluctance to expose the scope and nature of problems like remediable deficiencies and toxicities;

  • concerns about truly informed consent (for children, by their parents or guardians);

  • demands on health services imposed by certain results;

  • concerns about confidentiality;

  • vested interests in current structures and the myth of homogeneous Indigenous health profiles and needs;

  • concerns about logistics and the cost of screening in remote areas; and

  • concerns about potential misuse of data and of stored biologic samples, (including unauthorised genetic testing).

They all need to be aired, confronted and debated if we are serious about better understanding and improvement of Indigenous health.

Doesn’t this exclusion of the right to participate and even the right to know about national campaigns for the common good constitute a violation of human rights for these citizens of Australia?

It might be too late to remedy the situation for this cycle of the survey. And the next opportunity will be six years hence, with results 8 years away, only 10 years before the target date, albeit optimistic, for “Closing the Gap”.

But let’s not leave it there. This is the occasion to revisit the model of non-elected groups speaking for indigenous people in all their diversity, most especially in matters which restrict, rather than promote their rights.