A digital health platform for endometriosis research and support will be developed by the University of Adelaide’s Robinson Research Institute thanks to $1.2 million funding from the Federal Government and Jean Hailes for Women’s Health.
This project will harness the collective power of the endometriosis community – patient groups, researchers and clinicians – to deliver awareness and education, research capability and enable a new life trajectory for girls and women with endometriosis.
Foundational to the project is collaboration with, and learning from, women with endometriosis. It will build a better understanding of what works and how women can benefit from others’ experience. It will provide access to information, resources and engagement with research.
Associate Professor Louise Hull, Leader of the Endometriosis Research Group at the Robinson Research Institute said “The project represents a great opportunity for community advocates, researchers and clinicians to develop a collaborative way of understanding research that will deliver the benefits that the endometriosis community is asking for.”
This project will include a wide range of research disciplines including health informatics, biomedical and clinical research expertise. It will also link into local support networks, active clinical trials and new research opportunities.
More than 700,000 Australian women and girls live with endometriosis, with a delay between onset and diagnosis of 7-12 years.
Understanding and addressing this delay in diagnosis and treatment is a complex problem requiring close engagement with those with lived experience of endometriosis, advocacy groups, clinicians, GPs and policy makers, and requires a multi-disciplinary research team and program.
Professor Sarah Robertson, Director of the Robinson Research Institute said “The involvement of consumer groups working directly with scientists and clinicians in the research process to co-design and evaluate an effective web-based platform makes the project a first for Australian women with endometriosis.
“We aspire to create a web-based platform that will become a dynamic forum for ongoing connection and iterative engagement of women directly in the research process, so we can work collaboratively to find solutions for this common and debilitating condition.”