1. Aboriginal and Torres Strait Islander and Māori governance within ANZDATA
Indigenous Working Group
Jaquelyne T Hughes, Donisha Duff, Suetonia C Palmer with Tonya Kara
Paul Lawton, Siah Kim, Johan Rosman, Curtis J Walker, Matthew Jose, Stephen McDonald
Acknowledgment to country
“I respectfully acknowledge the traditional owners of the land on which this event is taking place today the Nyoongar people of Western Australia, their elders past, present and future”.
I also acknowledge the investments made by renal patients and clinical teams to achieve high quality clinician-consumer engagement, so that all renal patients represented in ANZDATA can achieve their best health outcomes.

2. Aim
To explore ANZDATA governance and custodianship principles for Aboriginal and Torres Strait Islander and Māori data.

3. Health care -health service -overarching health system
Access to health care involves (client) accessibility and (client) utilisation (Starfield 2001), and must stem from the clients understanding of health.
Health services comprise structure, process and outcomes (Starfield 2001), and must strive for clinical effectiveness and deliver cost-effective care (Ashford et al 1999).
A health system is ‘all the activities whose primary purpose is to promote, restore and/or maintain health’ (WHO 2013b). Further, a good health system ‘delivers quality services to all people, when and where they need them’. "
NT Health Services Act 2014: “A unified Australian Health system is described as allowing equitable access to services regardless of geography; it is shaped around the health needs of the patient, their family and community; and its focus shall also include maintenance of health. Key objectives of a unified health system are to value patient experiences; social inclusiveness and Indigenous Health; and sustainability” (Health Services Act , pp. 1-3).
Health care provision fits within the framework of the health service, and the overarching health system.

4. ACQR Strategic Principle:
Definition
ACQR Strategic Principle: 41
Attributes:

5. Although ANZDATA is adherent to ACQR principles including data acquisition, storage and reporting, ACQR lack data governance criteria for Aboriginal and Torres Strait Islander peoples or Māori.
What might be needed…….

6. Health is…..
“Health is not just the physical well-being of the individual but the social, emotional, and cultural well- being of the whole community…. This is a whole-of-life view and it also includes the cyclical concept of life- death-life.”
(National Aboriginal Health Strategy Working Party "A national Aboriginal health strategy". Canberra: Department of Aboriginal Affairs )

7. Existing Indigenous health research
“Research is predominantly descriptive (75-92%) with very little intervention research (what works)”
“Dominance of descriptive research is not ideal and should be carefully considered by research organisations and researchers when developing policies”…
MJA 15 May 2006 Sanson-Fisher R, et al.

8. Context
Historical disempowerment of indigenous peoples in research [misrepresentation of interests and some physical harm]
Improved processes for ethics review and partnership and awareness of indigenous rights to knowledge and development
Emerging concept of indigenous governance within data repositories and registries

9. Identifying the need for increased governance
“You need to seek Aboriginal community input into the research project. The Indigenous advisory group [you consult with] must be independent to ensure that advice etc is able to be given freely”
Indigenous communities and organizations expect to be involved in data practices and analyses that are based on community priorities and that build capacity to execute and direct research in order to close the gap on indigenous health outcomes
“HRC Guidelines suggest it is important to show how your research results may contribute to Māori health gain. This should not only occur in an academic forum, but also within the community from where the data is drawn.”
Aboriginal Health and Medical Research Council of NSW during ethics application process for ANZDATA project
Consultation with an independent Indigenous advisory group
Demonstrate how your research contributes to Maori health gain (academic; but also in the community where that data was drawn)
Expectations of communities to be involved in developing research priorities
Expectations of communities to be meaningfully engaged in all aspects of the projects, and that includes research capacity
BMC Health Services Research 2014;14:517 – on research in the Kimberley region
Letter of approval for ANZDATA analysis during Māori consultation

10. Kaupapa Māori action

12. Context
1978
2003
2014
“long-term aim for local services connected to researchers to identify priorities and participate in most research. A more radical reconceptualising of the research process is needed”

13. Definition of data governance
Ownership –
relationship of communities to cultural knowledge, data and information
Control –
communities and representatives are within their rights to control research and information processes that affect them
Access –
rights of people to access information and data about themselves and communities regardless of where these are held
*Possession - refers to actual custody and holding of data and is distinguished from ownership as being more literal in meaning.
The First Nations Information Governance Centre. Ownership, Control, Access and Possession (OCAP): The Path to First nations Information Governance. May (Ottawa: the First Nations Information Governance Centre, May 2014). Access from:
The First Nations Information Governance Centre. Ownership, Control, Access and Possession (OCAP): The Path to First nations Information Governance. May (Ottawa: the First Nations Information Governance Centre, May 2014). Access from:

14. Possible considerations for ANZDATA

15. Examples of other registries

16. Challenges Benefits Limited capacities in both ANZDATA and communities
Resources needed
Knowing what is required
Increased bureaucratic burden
Benefits
Supporting researchers/clinicians
Data rigor and relevance
Improving Indigenous knowledge and health services
Enhanced ANZDATA reputation

17. Aspiration ANZDATA develops sustainable structures that:
actively include Aboriginal, Torres Strait Islander and Māori communities and organisations in ANZDATA practices
AND
are based on community priorities and that build capacity to execute and direct research/outputs that help to close the gap on indigenous health outcomes

18. How?
ANZDATA Positions itself to be a receptive partner with Indigenous people and Maori, valuing the interpretive skill in this data, and thus the health policy imperative learned from ANZDATA
ANZDATA: seek mentor from an existing registry that has greater knowledge and experience in indigenous data governance
ANZDATA: Support research capacity in the community
ANZDATA: Reconciliation Action Plan
ANZDATA: Projects referred for HREC review
ANZDATA: Report project information
ANZDATA: Consumer reports

19. Comments and ideas…on the way forward.

20. Starfield, B 2001, 'Basic concepts in population health and health care', Journal of Epidemiology and Community Health, vol. 55, no. 7, pp
Ashford, J,et al. 1999, 'Improving health care through professional behaviour change: introducing a framework for identifying behaviour change strategies', British Journal of Clinical Governance, vol. 4, no. 1, pp
Australian Commission on Safety and Quality in Health Care, Framework for Australian clinical quality registries. Sydney. ACSQHC, March 2014.
National Aboriginal Health Strategy Working Party "A national Aboriginal health strategy". Canberra: Department of Aboriginal Affairs., 1989, Canberra, viewed 5 December 2012, <
Sanson-Fisher, R et al , 'Indigenous health research: a critical review of outputs over time', MJA; 184: 502–505
Mc Loughlin, F et al , 'Aboriginal health research in the remote Kimberley: an exploration of perceptions, attitudes and concerns of stakeholders', BMC Health Services Research, vol. 14, no. 1, p. 517.
NHMRC Values and Ethics:
Health Services Act NT:
The First Nations Information Governance Centre. Ownership, Control, Access and Possession (OCAP): The Path to First nations Information Governance. May (Ottawa: the First Nations Information Governance Centre, May 2014). Access from:
Te Ara Tika: Guidelines for Māori research ethics: A framework for researchers and ethics committee members
Aboriginal and Torres Strait Islander data archive: