NACCHO Aboriginal Health Research News : Should Aboriginal health data and research be community controlled ?

Data

 ” Currently, the population and health service use of data relating to Indigenous Australians is scattered and often difficult to access. There are significant barriers to using this data as Indigenous identifiers are often missing or incomplete.

For example, recent research has showed that there is no birth registration for around 18 percent of children under the age of 14 in Western Australia.

A national capability to accelerate research to improve Indigenous health should be established.

The capability would consist of a centralised linkage and data clearinghouse to analyse datasets, including by Indigenous researchers, ensuring that best use is made of existing data for the Indigenous community, while respecting Indigenous needs around data collection and sharing “

Chief Scientist Alan Finkel releasing  an issues paper 

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2016_national_research_infrastructure_capability_issues_paper

Its terribly important that research is done by people who are part of the communities’

As CEO of NHMRC, I feel enormously privileged to be able to contribute to Australia’s progress in reconciliation through the work of our agency.

I want to create more opportunities for Aboriginal and Torres Strait Islander peoples to work, learn and undertake research with us, and I want to improve the life expectancy and health outcomes of Aboriginal and Torres Strait Islander people through targeted support for health and medical research and translation.”

National Health and Medical Research Council chief executive Anne Kelso agreed on the need to improve efforts to reduce disparities and poor health results for indigenous people:

In 2002, NHMRC made a landmark commitment to direct at least five per cent of our research funding to Aboriginal and Torres Strait Islander health.  We maintain and exceed this commitment today.

In 2010, we produced NHMRC Road Map II: a Strategic Framework for Improving the Health of Aboriginal and Torres Strait Islander People Through Research This Road Map identified seven action areas:

    1. Improving the participation of Aboriginal and Torres Strait Islander people in NHMRC programs
    2. Capacity exchange
    3. Promotion of NHMRC’s role in Aboriginal and Torres Strait Islander health
    4. Close the Gap
    5. Evaluation research
    6. Intervention research
    7. Priority-driven research

FROM NHMRC Website Reconciliation week Statement

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Aboriginal Health In Aboriginal Hands

Hear our Voices NACCHO TV Interviews

Below From Sean Parnell The Australian Health Editor The Australian

The head of the nation’s peak health funding advisory group has called for more work to be done improving healthcare delivery as key agencies revisit the value-for-money proposition across the sector.

National Health and Medical Research Council chief executive Anne Kelso said that although most research had the potential to improve healthcare delivery, ­focused health-services research could address issues of efficiency and efficacy while ensuring the best results for patients.

“The great majority of our funding is going currently to clinical research and biomedical ­research, a smaller proportion to public-health research and a smaller proportion still to health- services research,” Professor Kelso said.

“There is a need for more funding for health-services research in this country to guide better health-service delivery.”

Professor Kelso said although only a small percentage of council funding went to health-services research, that also reflected the low number of applications and limited capacity. However, she reiterated it was an area of crucial importance to the community and deserved more attention.

Professor Kelso said the creation of a $20 billion Medical Research Future Fund would provide an opportunity for Australia to reassess how limited ­research funding is distributed, for what purpose and by whom, to increase its impact.

Her comments came as Chief Scientist Alan Finkel moved to address possible gaps in research infrastructure — which may require the decommissioning and defunding of unneeded facilities — and the CSIRO announced a new director of health and bio­security.

Professor Finkel released an issues paper suggesting a need for a collaborative approach to the use of PET tracers and cyclotrons, better access to stem-cell lines and training, and a population biobank.

However, the paper notes that “in times of fiscal constraint, governments internationally are looking at new ways to fund research ­infrastructure outside the ­traditional grants paradigm”.

The paper also called for better use of existing data on the health of indigenous Australians, which it said was “scattered and often difficult to access” with significant gaps, such as no birth registration for about 18 per cent of children under 14 in Western Australia

Professor Kelso agreed on the need to improve efforts to reduce disparities and poor health results for indigenous people, adding that it was also “terribly important that research is done by people who are part of the communities’’.

NHMRC has a long history of working to improve health outcomes for Aboriginal and Torres Strait Islander peoples. 

National Health and Medical Research Council chief executive Anne Kelso

Reconciliation is an important part of the culture and goals of our agency.

National Reconciliation Week celebrates and builds on the respectful relationships shared by Aboriginal and Torres Strait Islander peoples and other Australians. This year’s theme Our History, Our Story, Our Future, encourages us to consider the place of Aboriginal and Torres Strait Islander histories, cultures and rights in our nation’s story.

It is also a time for us to reflect on our own journey towards reconciliation.

In 2002, NHMRC made a landmark commitment to direct at least five per cent of our research funding to Aboriginal and Torres Strait Islander health.  We maintain and exceed this commitment today.

In 2010, we produced NHMRC Road Map II: a Strategic Framework for Improving the Health of Aboriginal and Torres Strait Islander People Through Research This Road Map identified seven action areas:

  1. Improving the participation of Aboriginal and Torres Strait Islander people in NHMRC programs
  2. Capacity exchange
  3. Promotion of NHMRC’s role in Aboriginal and Torres Strait Islander health
  4. Close the Gap
  5. Evaluation research
  6. Intervention research
  7. Priority-driven research

In 2016, NHMRC’s Principal Committee Indigenous Caucus is helping us to develop Road Map III to articulate and drive the next stage of our strategy to improve Aboriginal and Torres Strait Islander health through research.

Although progress has been made, Aboriginal and Torres Strait Islander peoples continue to experience poorer health status than other Australians, including lower birth weight, higher mortality from chronic disease, and shorter life expectancy. Many NHMRC-funded researchers are making a valuable contribution towards addressing this health disadvantage that Indigenous Australians face.

As CEO of NHMRC, I feel enormously privileged to be able to contribute to Australia’s progress in reconciliation through the work of our agency. I want to create more opportunities for Aboriginal and Torres Strait Islander peoples to work, learn and undertake research with us, and I want to improve the life expectancy and health outcomes of Aboriginal and Torres Strait Islander people through targeted support for health and medical research and translation.

The relationships that we seek to strengthen through reconciliation are the foundation for our nation’s future success and wellbeing. National Reconciliation Week (link is external) is an opportunity to celebrate the progress made so far and to recommit to our goals for the future.

Professor Anne Kelso AO

27 May 2016

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