P127 Parliamentary Inquiry into Sleep Health Awareness in Australia: How patient-centric is the process?

Abstract

Abstract Introduction The parliamentary inquiry into sleep health represents one of few platforms accessible to patients and their family/carers to contribute to the development of healthcare policy alongside other key stakeholder groups (i.e. healthcare professionals, organisations). Balancing diverse and sometimes divergent views of various stakeholder groups can be challenging, thus we set out to explore how patients and family/carer submissions were interpreted by the inquiry and translated into health policy recommendations. Methods Written submissions made to the Parliamentary Inquiry into Sleep Health Awareness in Australia 2018 by self-identified patients or family/carers with narcolepsy (n=13) were extracted and thematically analysed using the Framework Approach. Each submission was systematically coded, with emergent themes evaluated against the final policy recommendations made by the inquiry. Results We identified three major themes: 1) ‘Pathways to Treatment & Care’ regarding concerns around lack of healthcare and research resource allocation for narcolepsy; 2) ‘Help-seeking Experience’ related to barriers to help-seeking and accessing care; 3) ‘Patient and Family/Carers’ Lived Experience of Disease’ which encompassed the tangible effects narcolepsy has on the daily lives of patients and family/carers. Discussion While patients and their family/carers prioritised issues that affected their daily lives (i.e. mental health sequela, workplace accommodations), policy recommendations focused on healthcare infrastructure, funding and engagement. Increased transparency, developing processes to balance stakeholder priorities and improving accessibility to stakeholder engagement are needed if patient and family/carer needs are to be met, and for healthcare policy to remain targeted and trusted by the public.