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.

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

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 2014 2014, pp. 1-3). Health care provision fits within the framework of the health service, and the overarching health system.

ACQR Strategic Principle: Definition ACQR Strategic Principle: 41 Attributes:

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…….

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. 1989. "A national Aboriginal health strategy". Canberra: Department of Aboriginal Affairs. 1989)

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.

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

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

Kaupapa Māori action

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”

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 2014. (Ottawa: the First Nations Information Governance Centre, May 2014). Access from: www.fnigc.ca The First Nations Information Governance Centre. Ownership, Control, Access and Possession (OCAP): The Path to First nations Information Governance. May 2014. (Ottawa: the First Nations Information Governance Centre, May 2014). Access from: www.fnigc.ca

Possible considerations for ANZDATA

Examples of other registries

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

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

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

Comments and ideas…on the way forward.

Starfield, B 2001, 'Basic concepts in population health and health care', Journal of Epidemiology and Community Health, vol. 55, no. 7, pp. 452-4. 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. 14-23. 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. 1989. "A national Aboriginal health strategy". Canberra: Department of Aboriginal Affairs., 1989, Canberra, viewed 5 December 2012, <http://www.health.gov.au/internet/main/publishing.nsf/Content/health-oatsih-pubs-NAHS1998>. Sanson-Fisher, R et al. 2006, 'Indigenous health research: a critical review of outputs over time', MJA; 184: 502–505 Mc Loughlin, F et al. 2014, '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: https://www.nhmrc.gov.au/guidelines-publications/e52 Health Services Act NT: http://www.austlii.edu.au/au/legis/nt/num_act/hsa201418o2014207/s3.html The First Nations Information Governance Centre. Ownership, Control, Access and Possession (OCAP): The Path to First nations Information Governance. May 2014. (Ottawa: the First Nations Information Governance Centre, May 2014). Access from: www.fnigc.ca Te Ara Tika: Guidelines for Māori research ethics: A framework for researchers and ethics committee members http://www.hrc.govt.nz/sites/default/files/Te%20Ara%20Tika%20Guidelines%20for%20Maori%20Research%20Ethics.pdf Aboriginal and Torres Strait Islander data archive: http://www.atsida.edu.au/