Patient-led identification of unmet health and psychosocial needs by people with intellectual disability

People with intellectual disability have a high number of unmet health and psychosocial needs that contribute to poor health outcomes and premature deaths at a rate that eclipses other priority groups in Australia. Routine health screening has been identified as a mechanism to identify and address unmet needs to improve health outcomes. Patient-reported outcome measures (PROMs) are widely adopted as a mechanism for patient-led identification of their unmet health and psychosocial needs. Digital PROMs known as ePROMs can be used to routinely identify unmet needs and facilitate feedback to healthcare staff that enables additional care to be provided to improve health. Yet PROMs are not used with people with intellectual disability; they are excluded from this screening due to the lack of suitable measurement instruments and supports. 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 identify, optimise and apply ePROMs with people with intellectual disabilities accessing outpatient and community care. ePROMs screening results will be used by healthcare providers to provide appropriate care, leading to improved health outcomes. Collaborating with consumers, health services and state health system teams, we will create and embed the capability required for these stakeholders to implement and sustain an ePROMs system to identify and address needs to improve the health of people with intellectual disabilities beyond the project lifecycle.