I’m very happy to announce that my project “Improving eHealth system experiences of people with intellectual and developmental disability”, in collaboration with my colleagues Prof Vesna Popovic from QUT and Dr Kate Van Dooren and Prof Nick Lennox at QCIDD, has been awarded a one-year stimulus grant from the Australian Centre for Health Services Innovation.
AusHSI is a new centre based in QLD which aims to “address health system challenges with multidisciplinary research teams and clinical engagement.”
AusHSI will encourage Queensland-based health services professionals to do research in partnership with academics, and to disseminate to policy makers and politicians. We will fund projects that improve health services, offer a range of training and skills development, and undertake consulting and advisory services that complement our mission. AusHSI will drive knowledge translation to improve decision making.
The project is prompted by the coming introduction of eHealth records to the Australian health system. Patient-controlled eHealth records are fairly well known overseas but tend to be implemented at the clinic or regional level. The Australian roll-out will be for every citizen in the country. International research suggests that using patient-controlled eHealth records is especially problematic for disadvantaged populations. We’ll be looking at users and potential users of the PCEHR as the pilot of the system is rolled out in specific locations in Brisbane.
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.
Building on QCIDD’s clinical expertise and recent research about eHealth records, and the People and Systems Lab’s innovative techniques for researching consumer experience of complex services, we will investigate the early use of the eHealth system by people with intellectual and developmental disability.