Higher Degree by Research Student
The University of Sydney
This is the key finding of a new study, led by Life Course Centre researchers from The University of Sydney, which investigated the Australian Government’s Parliamentary Inquiry into Sleep Health Awareness 2018. Using this inquiry as a case study, the research examined how the voices of patients and their families were reflected in the inquiry process and outcomes.
“Parliamentary inquiries represent one of few opportunities for patients, families and carers to contribute directly to the development and reform of healthcare policy,” said lead author Aaron Schokman. “Our findings suggest that while the inquiry process in its current form is not an ideal vehicle for patients and their families and carers to contribute to or influence healthcare policy”
“Increased transparency, improved accessibility to participate, and the development of processes to balance stakeholder priorities are all needed if health-related parliamentary inquiries are to produce healthcare policy that ultimately meets the needs of patients and their families.”Aaron Schokman
The study analysed the 131 written submissions made to the Parliamentary Inquiry into Sleep Health Awareness, with a particular focus on those specifically related to the rare and less well-known sleep disorder, narcolepsy.
While submissions made by narcolepsy patients and family/carers highlighted their everyday lived experiences in areas such as mental health and employment, these were not reflected in the final report – where policy recommendations focused mainly on healthcare infrastructure and funding.
“Despite calling for submissions from patients and family/carers, the final report and subsequent health policy recommendations made by the inquiry do not appear to be patient-centric or reflective of the submissions written by these stakeholders,” Mr Schokman said.
“Empowering everyday Australians to shape the healthcare system is particularly important in the context of rare diseases like narcolepsy, as limited population data collection and less research places greater emphasis on the lived experience of the patient.”
Mr Schokman has his own lived experiences of narcolepsy and is undertaking his PhD research on the sleep disorder under the supervision of Life Course Centre Chief Investigator Professor Nick Glozier. He said the study into the Parliamentary Inquiry into Sleep Health Awareness showed that inquiries can suffer from a lack of transparency when translating submissions as well as limited disclosure of potential conflicts of interest among stakeholders.
With the inquiry concluded and recommendations submitted to parliament in 2019, no response or acknowledgment of the findings has been forthcoming, Mr Schokman said. “This poses the question of whether it is ethically fair to ask patients and their family and carers to publicly share their lived experience with no guarantee that the recommendations will be accepted, let alone addressed?”
The study also identified barriers that patients and family/carers face in contributing to inquiries, particularly from low socio-economic, regional, remote, Aboriginal and Torres Strait Islander and non-English speaking backgrounds.
Reforms addressing these concerns is needed to ensure healthcare policy is targeted, trusted, and incorporates the voices of everyday Australia.
Contact: Aaron Schokman, Email: email@example.com
Go to full article: ‘How patient centric is health policy development? The case of the Parliamentary Inquiry into Sleep Health Awareness in Australia’ Australian Health Review.