Two experts share their experience of addressing disparity in cancer care.
Cancer care is suboptimal for some groups in Australia, but the disparities can be overcome, experts told delegates at the Clinical Oncology Society of Australia ASM in Brisbane last month.
While cancer instances went down by 16% between 1998 and 2015 for Australians as a whole, the numbers increased for Indigenous Australians by 26%.
Rural Australians were 1.3 times more likely to die from cancer in 2021 and members of the LGBTIQA+ community were also disproportionately affected by certain cancers, including breast and ovarian cancers.
Queensland Health Professor Elizabeth Ward has been focussing on enhancing access to speech pathology services for rural patients with head and neck cancer.
Treatment for head and neck cancer is complex and requires management by a coordinated multidisciplinary team of medical, specialised nursing and allied health professionals.
“It is the best model for our patients,” Professor Ward told delegates, “but how do our regional and rural patients fare when they’re accessing this care?”
According to Professor Ward, this type of model warrants highly centralised and integrated care, which is typically based in metropolitan centres and is limited to only a few sites per state.
In addition to the heightened physical challenges, family stress and financial and employment difficulties that come with a cancer diagnosis, patients from rural areas are commonly faced with extensive travel to access medical services unavailable closer to home, she said.
Many of Professor Ward’s patients felt that rural services would not offer the same opportunities and standards of care compared to the more centralised model.
“They felt this massive health burden and stress, needing to go back to the [metropolitan] cancer service,” she said.
Professor Ward’s team developed an optimised rural care model for head and neck cancer patients, increasing the capacity of head and neck cancer treatment in regional hospitals, which do not currently offer the same scope of care.
A survey of consumers, clinicians and managers from rural sites highlighted two predominant themes: the sizeable responsibility that patients felt in navigating their own healthcare, and the overall burden of going through cancer care.
From these findings, the researchers identified several key issues including transfer of care to local services, the need for a clear pathway and handover process, communication and collaboration and staff training and upskilling.
“We needed to make sure we had a service that our patients felt they were going to get quality care from and not see it as some sort of secondary level care,” Professor Ward said.
Researchers spent six months analysing the data and assessing the changes that could be made in a particular rural and regional catchment.
This was followed by a second six-month testing process with 10 patients from any of the catchment areas, in which 80% of cases were successfully managed.
“What we are very excited about is the beginning of this work has shown that we can support rural speech pathologists to work to full scope of practice and create real and meaningful change for our patients with head and neck cancer who live in rural areas,” Professor Ward concluded.
“We are now seeking funding to do a two-year follow-up study evaluating the service.”
Dr Kalinda Griffiths, an epidemiologist at the Centre for Big Data Research in Health at the University of New South Wales, works on empirically addressing complex health disparities through existing data, particularly by using Indigenous data for research and reporting purposes.
“The conversation about the context of Indigenous data is often a challenging one to have,” said Dr Griffiths.
“But at its core, it’s better to understand these issues.”
She said there were three primary issues in Indigenous data collection: who is counted, how many people are counted and what is counted and measured.
Dr Griffiths’ group has performed two major systematic reviews, one focusing on operation mode using Indigenous data sovereignty, the legal authority over Indigenous data, and another on Indigenous data governance, the principles and practice over its use.
Addressing inequity and the needs and aspirations of Indigenous people begins with the application of human rights and the appropriate and effective use of Indigenous data, said Dr Griffiths.
She emphasised that supporting Indigenous worldviews, values, understandings and practices within Western structures plays a crucial role in the rights and interests of Indigenous people being met.
“We require Indigenous data governance that provides a collective representation of the needs of individuals and communities,” she said.
“If data is to be used to tell our stories and experiences, then we need to be at the table.
“And we need to be aware that we have every right to be so.”