1:280 Australians are believed to carry a faulty cancer repair gene associated with LS. The health system has no record of how many are diagnosed, cancer control services aren’t designed for those with multiple, different cancers; and there is no designated practitioner whose role it is to help those living with cancer and the threat of cancer, navigate the siloed health system and coordinate vital surveillance regimes.
Only about 40% of adults have the level of individual health literacy needed to meet the complex demands of everyday life . Individuals with LS are often left to manage alone without understanding the syndrome, its risks, the health system and where to access support.
Findings from Lynch Syndrome Australia's (LSA) world-first 2015 survey of 465 health consumers shaped a two-year program. Initiatives were designed to address the main challenges, such as bespoke support and information, for some of the 100,000 affected Australians.
Firstly, LSA designed a model for patient engagement that created a community of patients, practitioners and researchers which instilled a culture of cooperation with health consumers.
Next, they explored how to make consumers part of the solution and work in partnership with health care professionals to manage this lifelong condition by reviewing best practice worldwide.
LSA delivered seven national seminars to 330 consumers who engaged with a network of 30 medical and research experts.
LSA created leading-edge, evidence–based website and social media platforms, including an advocacy video viewed 10,500 times.
These initiatives represent the first coordinated support for those with LS. As more Australians are diagnosed, it is imperative to educate health professionals to be partners in care and support, as modelled by breast cancer nurse care.
 Australian Commission on Safety and Quality in Health Care, 2014. Health Literacy National Statement. Accessed 9 August 2016.