Introduction of Consumer Reference Council

Over the years we at the SHF have always aimed to capture the voice of people with lived experience of sleep disorders.  We strive to deepen community understanding of the importance of sleep for health, why sleep disorders need professional diagnosis and treatment; and, to provide information about common sleep difficulties and how to address them. How better to do this than to have advice and guidance from those experiencing sleep disorders?

We have recently formed the Consumer Reference Council chaired by Associate Professor Andrew Vakulin from Flinders University (and SHF Board member) and Dr Camilla Hoyos from the University of Sydney. The Council consists of 9 people with a broad range of sleep disorders including obstructive sleep apnoea, insomnia, narcolepsy, idiopathic hypersomnia, restless legs syndrome, delayed sleep wake phase disorders and adolescent sleep disorders. The primary function of the Consumer Reference Council is to provide strategic and advisory input to the SHF Board on matters relating to advocacy, education, partnerships and research, to ensure that the consumer voice and perspective are heard and at the core of all SHF activities. All consumer members applied via an advertisement that went out to the public via our usual channels including our website. The successful candidates have been invited by the SHF Board for a 2-year term, with an option of further 2 x 2 year terms on review and, if invited by the Board, the opportunity to extend their term. There have only been a few meetings to date but the Consumer Reference Council will have at least four meetings per year, or more as the Chairpersons may determine.

We are really pleased that we have this very important component well established now within the SHF as we need the consumer voice to better understand the unmet challenges and needs across the patient/consumer journey. This will help us to create the tools/resources that are needed to better manage sleeping difficulties. This Council will also help us to improve access to treatments and help us with our community and political advocacy.