Every child should have access to the care they need, care that is tailored to them.
But we know that many of the 5.5 million people living with disability (ABS, 2022) face significant barriers in accessing health care and often have poorer health outcomes compared to people without disability.
It’s why The Royal Children’s Hospital (RCH), in partnership with the Royal Melbourne Hospital, The Royal Women’s Hospital, The Peter MacCallum Cancer Centre, Austin Health, The University of Melbourne and Healthy Trajectories, has integrated and evaluated a patient self-report Disability Identifier (DI) for the Electronic Medical Record (EMR).
It’s an Australian first – a way for patients and their families to self-report their disability and any assistance or adjustments they may need when accessing healthcare, within their EMR. It was co-designed with people with lived experience of disability. The project has also been announced as the Winner of the Partnering with Consumers to Improve Patient Experience category 2024 Victorian Public Healthcare Awards.
A recent innovative research collaboration looked at the utility and acceptability of the DI over its first nine months of implementation.
The RCH’s DI Project Manager Joanne Rowe explained the study found the questions had demonstrated substantial utility in identifying individuals with disability and capturing relevant data about their difficulties and assistance needed when accessing healthcare.
“This data provides us – for the first time – with a snapshot of which of our patients report having a disability. And crucially, any adjustments or assistance they need to access our healthcare service,” Joanne said.
The report also found the acceptability of the DI questions was high among patients, carers, and clinicians, indicating a positive reception and a willingness to engage with the process.
The study contributes towards developing a standardised approach to disability identification, emphasising the need for continuous evaluation, stakeholder engagement, and leveraging digital health platforms to enhance the inclusivity of healthcare services and achieve equitable health outcomes for all.
“By sharing these learnings and resources, we hope to see this become part of standard care delivery and health service datasets,” Joanne added.
It’s important that this knowledge is shared far and wide, which is why the project team has designed an Accessible Care Toolkit, as a guide for other healthcare providers to incorporate the DI into their workflows and care delivery.
A lived-experience advisor on the project explained “these resources have basically opened a whole way of new thinking for me as a parent and advocate, and it’s something we should all be very excited about”.
The DI Initiative has been made possible with funding support from the Victorian Government through the State Disability Liaison Program, the RCH Foundation and in-kind support from the Centre for Health Analytics and the participating hospitals.
You can access the full report as well as the Accessible Care Toolkit at Disability Liaison : Disability Identifier.