Professor Reema Harrison from the Australian Institute of Health Innovation, Macquarie University, has received $1.9 million for a five-year project to improve health outcomes for and with people with intellectual disability.

The project was announced by the Health Minister The Hon Mark Butler MP and is funded by the Medical Research Future Fund Improving the Health Outcomes of People with Intellectual Disability grant opportunity.

Deputy Vice-Chancellor, Research, Professor Sakkie Pretorius congratulated Professor Harrison, saying the research stood to identify emerging physical and psychosocial health needs and enable access to appropriate care for people with intellectual disability.

“The commitment of this project to inclusive research empowers people with intellectual disability to co-design and co-lead efforts that will improve healthcare safety and quality – ensuring their voices are heard through accessible tools like tailored Patient Reported Outcome Measures (PROMs),” he said.

With leadership from and collaboration between people with lived experience of intellectual disability, carers, healthcare providers and multidisciplinary academic researchers, the project will co-produce and implement a PROMs system that allows patients to identify emerging physical and psychosocial health needs and access appropriate care for better health and wellbeing outcomes.

Routine health assessments have been identified as an effective mechanism for reducing inequities in the health outcomes of people with intellectual disability. PROMs are a form of patient-led health and psychosocial assessment that can identify a range of emerging physical and psychosocial health needs as people interact with the health system. Using PROMs data, services can provide tailored care that is responsive to individual needs, including facilitating preventive health actions, and providing referral to additional services to address unmet health and psychosocial needs.

Whilst emerging international trial evidence indicates PROMs provide effective identification of health needs, they are rarely designed for or used with people with intellectual disability.

“When patients with intellectual disability are supported to reflect on and articulate their health and psychosocial needs through patient-led tools, we will see a powerful ripple effect – not only do these tools foster greater health literacy, but they also strengthen self-advocacy among individuals, their families, and carers,” Professor Harrison said.

The chief investigator team includes researchers from University of Sydney, Monash University, University of New South Wales, Sydney Children’s Hospitals Network, Charles Sturt University and Western Sydney University. The project partner organisations are Agency for Clinical Innovation, Australian Commission on Quality and Safety in Health Care, NSW Health, and Monash Health.

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