About the sub-project
Consent to access routinely collected First Nations health data (both identifiable and de-identified) is a complex matter – with the absence of a nationally accepted best-practice approach to adopt, DIFFERENCE will undertake community engagement research to inform the approach to consent. It is acknowledged that consent to access health data may be dependent on the type and nature of health data (e.g., clinical measures – blood pressure, blood sugar vs health-related behaviours – physical activity, nutrition, alcohol, tobacco and substance use vs social health parameters – employment status, living standards, domestic and family violence etc.). As such, this community engagement research will also explore the type and nature of health data (both identifiable and de-identified) that should be shared and accessed. This project will seek the perspective of First Nations Family Support Workers (FSW) and First Nations community members involved in the BiOC Salisbury Hub.
This exploratory study aims to undertake community engagement to inform the approach to consent to access routinely collected First Nations health data and what type of health data to be shared and accessed as part of the DIFFERENCE project. This includes for both:
- Sharing data between primary and hospital settings for clinical care purposes
- Linking data from primary and hospital settings for research and quality improvement activities. This will be achieved through the following objectives:
- Understand First Nations Family Support Workers (FSWs) and First Nations caregiver’s views on the type and nature of health data to be shared and accessed.
- Understand FSWs and First Nations caregiver’s views on consent to access maternal, infant and perinatal routinely collected health data.
Build consensus (i.e., reach an overwhelming agreement among stakeholders) and contributing to the paucity of information and accepted best-practice approaches regarding consent to access First Nations peoples routinely collected health data for research purposes.
