Endometriosis, mental health and wellbeing

Endometriosis, mental health & wellbeing: co-producing insights by combining healthcare data with lived experiences to deepen understanding and shape better solutions through interdisciplinary work.

Endometriosis is a prevalent, painful and disabling condition which affects around 1 in every 10 women with significant implications for their mental health, wellbeing and quality of life. Yet it is still poorly understood and under-prioritised in research, including in relation to mental health/wellbeing in particular. This project’s overarching aim is to co-produce insights and policy recommendations to inform the development of interventions and improvements in care at the intersection of endometriosis and mental health and wellbeing, by involving patients (experts by experience), clinicians and an interdisciplinary group of researchers in the project team and organising a series of co-production workshops, alongside co-production of all outputs. 

It will draw on new research findings about endometriosis from the Atlas for Health ((https://www.ucl.ac.uk/health-informatics/research/disease-atlas), which uses routine healthcare data on 56 million individuals across England, with a particular focus on mental health-related data and findings emerging from Atlas analyses so far, exploring this further through focus groups with patients and clinicians. The project will focus particularly on how and why endometriosis is associated with common mental health conditions, and its wider relationship with wellbeing. Taking a co-production approach will mean involving experts by experience, an interdisciplinary group of researchers, and clinicians and other relevant stakeholders (e.g. health policy-makers) in the project team. The project will deliver co-produced workshops to integrate patients’ lived experiences with the quantitative data from the Atlas for Health, and into any recommendations developed. Co-Production Collective have been commissioned to deliver training for the team which will support with the design and implementation of co-production approach, to facilitate a reflective practice session at the project midpoint so are adapting based on learning as we go along, and to provide advice around the design of the planned workshops.