A new project led by the Florey Institute is using data from the VAHI-funded Australian Stroke Clinical Registry (AuSCR) to transform care after stroke and drive innovation in registry science.
Senior NHMRC Research Fellow Professor Dominique Cadilhac is leading the project, which is being supported through the Medical Research Future Fund.
As the Data Custodian of the AuSCR at The Florey, Professor Cadilhac knows the vital role registry data play in providing opportunities to target and better support people who are most vulnerable after stroke.
“The purpose of this project is to develop and evaluate, using registry data, a co-designed, nurse-led follow-up service to support people living with stroke,” Professor Cadilhac said.
“This service will provide targeted priority support to people who report new or ongoing health problems within 90-180 days of discharge from hospital after stroke that we flag as having extreme unmet health needs.”
Patient Reported Outcome (PRO) data taken from the AuSCR itself shows the need for the project, with 84% of survivors report that their long-term needs are not being met two years after stroke. Other AuSCR data shows only one in two stroke patients discharged into community from acute care received a discharge plan.
The two-year project will start with a co-designed intervention and preliminary testing in one AuSCR hospital. This is planned to expand to a randomised controlled trial with approximately 100 patients from up to six hospitals that participate in the registry.
“If successful, a major advantage is that the program can be directly integrated within our existing national stroke registry, enabling rapid translation,” Professor Cadilhac said.
Professor Cadilhac said there remains untapped potential to use registry and other similar data sources to enhance clinical practice through better directing and tailoring healthcare.
“PRO data can be used at the individual patient level to inform clinicians about the longer-term impacts of a condition. Optimal use of AuSCR PRO data could be used to better enable hospital-based clinicians to tailor their follow-up services and improve liaison with primary care providers.”
For more information on the AuSCR project, please contact Professor Dominique Cadilhac via email at firstname.lastname@example.org.
For information about using Patient Reported Outcomes data in VAHI reports, please contact Kate Riley Sandler via email at email@example.com