Pioneering co-created patient-reported experience measures for people with intellectual disability to improve health outcomes

People with intellectual disability experience major health inequity, poor health outcomes and premature deaths, which eclipse other priority groups in Australia. Key drivers of this inequity are unrelated to the aetiology of the disability itself, stemming from poor quality healthcare. Patient-reported experience measures are used worldwide to identify quality of care problems and address these to improve health outcomes. Yet people with intellectual disability are excluded from this data capture due to the lack of suitable measurement instruments and supports, compounding the known major health inequities for this population. Our team comprises of consumer researchers who have lived experience of intellectual disability, clinicians and academics who will concurrently increase consumer understanding of, and consumer involvement in, research at every project stage from its co-designed inception. We will co-create digitally enabled patient-reported experience measures (PREMs) with people with intellectual disabilities. We will apply the resulting patient-reported experience data in quality improvement projects at nationally in >20 hospitals via our project partners that include St Vincents Heath Australia to improve care quality and safety outcomes. Collaborating with consumers, health services and state-wide surveying teams we will create and embed the capability required for these stakeholders to implement and sustain PREMs for people with intellectual disabilities beyond the project lifecycle.