Partnering with our stakeholders to use data to drive better outcomes for Aboriginal people living with cancer

 

Overview

Since 2020, the Cancer Institute NSW has worked together with Aboriginal partners to deliver the Aboriginal People in NSW report, as part of our wider Reporting for Better Cancer Outcomes (RBCO) program.

Now in its third iteration the report is distributed to over 200 stakeholders working in Aboriginal health and cancer services in NSW and contains data and information from across the cancer control spectrum – prevention, screening, diagnosis, treatment, patient-reported measures and clinical trials. It also contains stories that represent the lived experience of Aboriginal people.

Stakeholders can analyse the data and information in the report to understand variation and drive improvement in the outcomes and experiences of Aboriginal people in NSW impacted by cancer.

Central to the success of the Aboriginal People in NSW report is the deep and coordinated local stakeholder engagement with Aboriginal health and cancer services, including the key partnership with the Aboriginal Health and Medical Research Council of NSW (AH&MRC) to drive the development and direction of the report. 

Despite state and national efforts, the health and wellbeing of Aboriginal people is still impacted by racism, social, cultural and economic factors. Improving equity of cancer outcomes for Aboriginal communities is a key priority of the NSW Cancer Plan.

Evaluation methodology

A mixed method evaluation, including program document review, surveys and consultations, has been used to assess the development process and early impact* of the Aboriginal People in NSW report.

This evaluation aimed to explore:

  1. The development process including the extent of stakeholder engagement driving the report
  2. The reach and usefulness of the report
  3. The extent to which the report currently contributes to system improvement.

It is acknowledged that multiple factors contribute to improving cancer outcomes and experiences for Aboriginal people in NSW and not all will be covered in these findings.  

*The Aboriginal People in NSW report has three published editions and is an ongoing piece of work. An evaluation to look at longer term impacts of the report will be undertaken at a later date.

Key findings

Engagement with Aboriginal health stakeholders has been a key factor to the successful development of the Aboriginal People in NSW report.

Collaboration with internal and external colleagues has been instrumental in ensuring the report reflects the needs of the Aboriginal health system, as well as Aboriginal culture and etiquette. Stakeholder partnerships have ensured the data and information captured is useful, understandable and actionable.

Specifically, external Aboriginal health stakeholder engagement has grown from five key engagements in 2020 to 33 in 2023.  

The partnership with the AH&MRC of NSW has particularly enriched the publication’s engagement and utilisation. They partnered with the Institute in key stages of report production including design, content review, and ethics approval.

Alongside the partnership with the AH&MRC of NSW, the Cancer Institute NSW also consulted with the NSW Aboriginal Cancer Strategic Partnerships & Performance Committee and Aboriginal Cancer Advisory Group, and other Aboriginal stakeholders to inform the report.

Stakeholder feedback is routinely captured to ensure accuracy, readability and cultural appropriateness. This feedback has resulted in optimisations to the report including:

  • Adoption of a strength-based reporting approach, for example reporting on rates of Aboriginal people who do not smoke instead of those who do.
  • Addition of lived experience stories, making the report person centred.
  • Improved supporting data narratives to better reflect Aboriginal culture, including content on holistic health and an acknowledgement that the report data reflects the lived experiences of Aboriginal people.
  • Updated imagery to better represent Aboriginal people.
  • Enhancement to data presentation.
  • Development of local health district snapshots (short reports) and AH&MRC of NSW regional snapshots.
The Aboriginal People in NSW report is seen as a trusted resource for informing quality improvement work, with health professionals believing that the report contains relevant and actionable data indicators. Key stakeholders, including those who are responsible for influencing Aboriginal health, are aware of the report.

The report has a wide reach and is distributed to:

  • 200 key Aboriginal health stakeholders via email upon its release.
  • 380 attendees at the annual RBCO Chief Executives meetings, held with each local health district, across NSW.
  • Attendees of relevant forums, committee meetings, presentations and conferences, which include stakeholders in non-executive roles, including Aboriginal Health Workers.
  • Additional stakeholders upon request.
As a person diagnosed with cancer moves through the health system, there are opportunities to collect data. The intrinsic value of the Aboriginal Report data is unlocked when critically analysed to understand how care is delivered and opportunities identified to improve patient outcomes and experiences in both local health settings and at the state level.

Feedback indicates that the reports are actively helping to inform a wide range of local quality improvement activities, including:

  • An Aboriginal Health Worker used a physical copy of the report in a patient consultation to share real cancer stories, helping break down stigma and to support their patient in their understanding.
  • An Aboriginal Health Worker used the report to inform a conference paper and conference poster.
  • A Cancer System Innovation Manager and Director of Aboriginal Health used the report to underpin a local health district Aboriginal Cancer Plan.
  • A Cancer System Innovation Manager requested their local snapshot report to help inform a grant application for Aboriginal Care Coordination.
  • A staff member from the Centre for Aboriginal Health used the report to inform a Closing the Gap report.

Additionally, the Cancer Institute NSW has utilised data and findings from the reports to inform our own programs including:

  • Consultations around the NSW Aboriginal Cancer Strategy (currently in development)
  • Cervical screening program development
  • Increase in 715 health assessments consultations and program development
  • To inform the roll out of the Aboriginal Cancer Care Co-ordinators program in local health districts across NSW.

Opportunities

Three key opportunities have been identified for the future of the Aboriginal People in NSW reporting program to deepen its impact on Closing the Gap initiatives:

  1. Continuing to strengthen our Aboriginal health stakeholder relationships, at multiple levels
  2. Continuing to strengthen our datasets (specifically the ability to report more current data and improved identification of Aboriginality, local data)
  3. Enhancing support for quality improvement activities.

What is next?

The next Aboriginal People in NSW report will be delivered in 2025. Development of this report will be guided by the Cancer Institute NSW, in collaboration with our stakeholders, including AH&MRC, and will look to align with Closing The Gap and the NSW Aboriginal Cancer Strategy.

Disclaimer: The author of this evaluation is not Aboriginal. Input throughout the review process was sought by the Institutes Associate Director, Aboriginal Strategy and Engagement.

Harnessing insights to effectively change behaviour: The collective impact of our cancer screening NSW Cancer Plan references