Co-developing a digital endometriosis symptom tracking and reporting tool to aid communication in healthcare

As we near the end of Endometriosis Awareness Month, we are taking the opportunity to showcase the impact work by Dr Robyn Jackowich in collaboration with Fair Treatment for the Women of Wales and Health Education and Improvement Wales. The project was Medical Research Council (MRC) funded through the Cardiff university Impact and Acceleration Accounts (IAAs).

They developed a digital symptom tracking and reporting system to help people record endometriosis symptoms and communicate more effectively with healthcare professionals.

IAA funding supported development of a digital symptom tracking and reporting system helping people record possible endometriosis symptoms and communicate them clearly to healthcare professionals. By supporting earlier recognition and discussion of symptoms, the system aims to improve pathways to diagnosis and care.

Researchers co-developed the system with patients, clinicians and designers to ensure it was accessible and practical in real healthcare settings. Working with Fair Treatment for the Women of Wales, the team produced bilingual animations and guidance explaining how the system works and disseminated it through NHS Wales resources and clinical networks. They also collaborated with Health Education and Improvement Wales to co-produce a webinar for GPs on endometriosis, and the tool.

IAA funding enabled co production with patient groups and healthcare professionals, ensuring the system responded to real user needs. It supported the creation of accessible bilingual resources and engagement with NHS partners, helping integrate the system into clinical pathways and expand its reach across Wales.

The project has also led to further projects and funding, including a Welsh Government grant to update the Endometriosis Cymru website and a funded PhD examining how symptom tracking can support self management and healthcare communication.