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

Area of Science:

• Indigenous Health Research
• Public Health Policy
• Data Governance

Background:

• Comprehensive Primary Health Care (CPHC) is vital for Aboriginal Community Controlled Health Organisations (ACCHOs) in Australia.
• Policy and funding challenges hinder ACCHOs' ability to deliver CPHC due to administrative burdens.
• Culturally informed data measures are marginalized, impacting CPHC service development and evaluation.

Purpose of the Study:

• To empower ACCHOs to lead data collection and usage for increased self-determination.
• To develop and implement culturally informed data measures and tools aligned with community needs.
• To enhance the capacity, skills, and infrastructure for utilizing meaningful data within ACCHOs.

Main Methods:

• Aboriginal participatory action research (APAR) mixed methods developmental evaluation approach.
• Collaboration with the South West Aboriginal Medical Service (SWAMS) in regional Western Australia.
• Development of a Community Research Panel, regional workshops for data literacy, and incorporation of Aboriginal research methods.

Main Results:

• The first phase focuses on establishing the protocol for developing culturally informed data measures and tools.
• Building data literacy and identifying innovative data solutions for selected health priorities.
• Ensuring the inclusion of Aboriginal ways of knowing, being, and doing throughout the research process.

Conclusions:

• This project will build ACCHO capacity for evidence-based decision-making and local evaluation.
• Supports self-determination by enabling real-time assessment of integrated care models.
• Strengthens Aboriginal Data Sovereignty (ADS) principles through community-led data initiatives.