Knowledge + Innovation = Power: A protocol for implementing Aboriginal data sovereignty in an Aboriginal Medical...

Comprehensive Primary Health Care (CPHC) is an interconnected, holistic, and strengths-based health and wellbeing approach fundamental to Aboriginal Community Controlled Health Organisations (ACCHOs) in Australia. However, policy and funding trends increasingly threaten the capacity of ACCHOs to deliver CPHC by imposing burdensome administrative and accountability requirements. A central constraint is the marginalisation of culturally informed data measures and tools that could enable improved development, implementation, evaluation and reporting of CHPC services and programs. To mitigate this, ACCHOs must be enabled to take charge of collecting and using meaningful data to increase self-determination and drive impactful policy and service delivery. Central to this approach is the capacity, skills, and infrastructure to collect and use culturally informed data and tools that align with community needs and organisational imperatives.

This project will undertake an Aboriginal participatory action research (APAR) mixed methods developmental evaluation approach to Aboriginal Data Sovereignty (ADS) initiatives. The project will be conducted both centrally and across the regional sites of the South West Aboriginal Medical Service (SWAMS), an ACCHO in regional Western Australia. Activities to initiate the APAR process include the development and training of a Community Research Panel to lead/facilitate APAR projects. A series of regional workshops will be held to build data literacy (including regional population health data) and identify innovative culturally-informed health and wellbeing data measures and tools for selected health priorities. Project team Aboriginal academic researchers and Aboriginal researchers at SWAMS will ensure the inclusion of Aboriginal research methods (Aboriginal ways of knowing, being and doing). Data collection will include both quantitative and qualitative data which will be analysed to identify the enabling processes and community and organisational outcomes as they align to the principles of ADS.

The protocol herein describes the first phase of a two-phase project, where the second phase will implement the new and/or adapted data measures and tools established in phase one of the project. This project will build capacity towards evidence-based decision making by ACCHOs and support self-determination by enabling local, real-time evaluation of the integrated models of care that ACCHOs deliver.