With about one-third of Australians living outside of major cities, ensuring equitable access to specialist surgical services can be extremely challenging.
Head and neck cancer surgery is a prime example of this. Most surgical services are offered in high-volume centres, which are located in major cities. However, incidence of head and neck cancers is known to be higher among people living in regional and remote Australia and among priority populations such as First Nations Australians. This highlights the need for high-quality research to understand how people access services and what challenges need to be overcome to ensure equitable access, which will inform models of care and changes to policy and practice.
Chris O’Brien Lifehouse is a not-for-profit comprehensive cancer centre in Sydney, with a high-volume head and neck surgery service. Since 2016, the centre has been offering outreach clinics in regional areas in New South Wales (NSW) including Port Macquarie, Tamworth, Nowra and Orange. Research has been a central pillar of the service since its inception.
In 2017, a program of research evaluating pathways to diagnosis and treatment of head and neck cancer in NSW was established. This work found evidence that regional and remote patients with head and neck cancer experience longer times to diagnosis and treatment than their metropolitan counterparts. General practitioners (GPs) in regional NSW also reported they routinely expected longer wait times for patients with suspected head and neck cancer to be seen by a specialist, compared to metropolitan GPs.
Given such delays can have devastating consequences for patients, including more advanced disease, more morbid treatment, and potentially leading to untreatable cancer and palliation, more must be done to understand and address access to cancer care in the regions.
This research was critical in providing evidence to secure funding to offer outreach head and neck surgery services on an ongoing basis. The outreach clinics offer more affordable access to diagnostic, treatment and follow-up services for regional communities by avoiding the need to travel to major cities for routine appointments. In addition, we have continued to build a program of research that now encompasses cancer survivorship, health economics and evaluation of the services provided from the perspectives of patients.
An essential component of the success of this research, and the impact that it has had on patients with head and neck cancer, is the involvement of regional clinicians and researchers. The concept of ‘nothing about us without us’ applies strongly here.
Effective health services research, if it should achieve its aim of policy reform to improve delivery of health care and outcomes, should be multidisciplinary and inclusive of all stakeholders. While metropolitan-based researchers focusing on regional health care have the best intentions, true change cannot be enacted without buy-in from those to whom the changes will apply – regional clinicians, researchers and, most importantly, patients and caregivers.
As we have found with delivering the outreach clinics themselves, effective and long-lasting research collaborations between metropolitan and regional clinicians and researchers can take time but are highly rewarding. Regional clinicians and researchers can offer insight into problems that might otherwise be hidden from metropolitan ‘visitors’ and can be the critical link to ensure that research and practice changes are successful.
These partnerships can be fruitful for all involved, with knowledge transfer and education between groups, ongoing capacity building for research and, ultimately, an increased likelihood that research will lead to sustained changes. However, there needs to be true partnership between groups involved, with early and regular engagement.
Embedding a research program into a regional outreach service for head and neck surgery has been successful to date, with improvements seen in access to specialised surgical care for those living in regional NSW. Ongoing evaluation of the service is essential and will continue to ensure that the service is meeting its intended outcomes and the expectations of regional communities.