Australian not-for-profit Crohn’s Colitis Cure is leading a global coalition of consumer and clinician groups developing an innovative personalised care solution for people living with inflammatory bowel disease (IBD).
The new cloud-based consumer app integrates patient-reported data with clinical records. Third parties and commercial partners can access this de-identified clinical data for research, treatment development, and regulatory submissions.
Patient representatives and health professional organisations in Australia, the US, the UK, and New Zealand are supporting the app's development and adoption.
IBD is a complex, chronic disease that currently has no cure. It requires specialist, multi-disciplinary care and significantly impacts the health system and the lifelong burden of disease on patients. Rates of IBD are rising globally. IBD is expected to affect 300,000 Australians by 2030.
Management and treatment can be challenging because there can be no single, simple way for people with IBD to self-manage and carry their health data, treatment history and care program from one clinician to the next over years or decades.
“No matter how good a country’s health system may be, some of the biggest issues for people with IBD and their clinicians are access to information and navigation of care. The more inaccurate or delayed the information, the less optimal the care journey, and therefore the burden of disease remains or grows. As does the financial and time burden to all involved, including health systems and governments,” said Bill Petch, the CEO of Crohn’s Colitis Cure (CCCure).
The potential benefit of the app could extend to enabling participation in clinical trials.
CCCure said it is now starting an extensive local and international consultation process to support the app's development. This process will include people with IBD, carers, clinicians, researchers and other relevant organisations.
