I’m working with my colleagues Prof Vesna Popovic from QUT and Dr Kate Van Dooren and Prof Nick Lennox from QCIDD to explore how people with intellectual disability (will) use and understand the coming Patient Controlled Electronic Health Record.
People with intellectual and developmental disability represent 2-3% of the Australian population and experience elevated rates of mortality and morbidity compared with the general population. This group of people must keep track of extensive medical information while also managing turnover of carers, GPs and other health professionals, making them beneficiaries of a unified eHealth record. Although they are key users, there is a lack of knowledge about how people with intellectual disability will make use of the system. This is a missed opportunity to improve the lives of an often overlooked group.