Cancer Data and Aboriginal Disparities (CanDAD) Project
The CanDAD project seeks to develop an integrated, comprehensive cancer monitoring system with a particular focus on Aboriginal people in SA. It will integrate cancer registry, hospital, radiotherapy, pharmacy, clinical, screening and health insurance data to comprehensively monitor cancer incidence trends, cancer management and survival. This project is unique as it will incorporate Aboriginal patients’ experiences with cancer services to guide continuous service improvement, community engagement, advocacy and outcomes research. The CanDAD project will provide data infrastructure for health services, population research, and training of Aboriginal (and non-Aboriginal) researchers.
Linking the data collected in the registry with narratives of Aboriginal people with cancer will enable the assessment of the quality and appropriateness of existing services, as well as looking at long term trends in cancer risk, burden and determinants. This project will also highlight areas of immediate need and provide a robust system for performance monitoring and evaluation.
What we aim to achieve
This unique Cancer Registry approach, which incorporates the experience of Aboriginal people with cancer, will improve the monitoring and system of care for Aboriginal people.
The CanDAD project will;
- Provide a meaningful focus on service provision and treatment for Aboriginal patients. The Cancer Registry will communicate to providers the quality of cancer control services for Aboriginal people at patient, provider and system levels.
- Provide the evidence for advocacy and system change. It will explore specific cancer journeys through a specialised facility by monitoring enablers and barriers to quality experiences.
- Identify potential interventions that focus on a health disparity through collaboration with Aboriginal patients and service providers
- Provide an ongoing, methodologically-sound process for monitoring Aboriginal health data and experience of cancer, and the associated outcomes of system change, which are context-specific and culturally-sensitive.
Our next steps and milestones
The project is in its first year, however, significant early work has laid the foundations for the project to continue as planned.
Analysis of survivorship of South Australian Aboriginal people with cancer is expected to be completed by the end of 2014. This also includes the analysis of the types of treatments received by those cancer patients, and the types of other diseases that they have alongside cancer.
Depending on allocation of funding, additional information may be included in this analysis. Data will continue to be collected from the Registry and presented to the Aboriginal Community Reference Group to continue capacity building and the development of community relevant advocacy tools. We will continue to negotiate the development of the Registry and the inclusion of qualitative data and will present our data at the 1st International Conference on Realist Approaches to Evaluation and Synthesis: Successes, Challenges & the Road Ahead in October 2014. These strategies will enable us to continue to increase the pool of information through interviews of Aboriginal people with cancer, carers and service providers.
What motivates you to pursue cancer research?
I am driven to both understand and do something about the disparities in access, quality of care and survivorship between Aboriginal and non-Aboriginal people with Cancer in SA.
My message to supporters
The needs and issues for Aboriginal people with cancer in SA need to be identified and addressed through collaboration with cancer services and Aboriginal people with cancer.
This project brings together all stakeholders to design a system that can quickly and effectively identify those issues and work through the solutions to improve health outcomes and quality of life.