“This project aims to highlight diverse perspectives, including those of populations historically overlooked in endometriosis research and care.”- Work Package 9 project Team
As part of the EUmetriosis project’s mission to tackle endometriosis from all angles -scientific, clinical, and social- this mixed team of researchers from The Netherlands and Scotland, Dr. Inga Winkler and Erica Selznick, and Dr. Andrea Ford and Paula Blancarte Jaber, respectively, are leading the research in understanding how people with endometriosis live with the disease day to day. The team are taking a qualitative, patient-centred approach to explore the role of self-management and lived experiences in the broader context of endometriosis care.
Understanding Endometriosis Beyond the Clinic
The team focus on the diverse and complex ways people experience endometriosis in their daily lives, relationships, and healthcare encounters. They are using in-depth, open-ended research methods to understand how patients navigate the disease, what self-management looks like in practice, what challenges they face, and how systems of care either support or fail them.
Crucially, the team are also examining how different groups, including patients, carers, medical professionals and policy-makers, perceive and interact with the concept of self-management. The aim is to produce recommendations for improving support structures, including policy and community-based resources, that truly reflect the diversity of patient experiences across Europe.
Where the Research Stands
The team are currently in the early stages of the project, focusing on designing the research methodology and securing ethical approval. Literature reviews are underway, alongside preparations for participant recruitment. These steps will lay the foundation for a research process grounded in inclusion, rigour, and research integrity.
Contributing to the Broader EUmetriosis Objectives
By centring patient voices and lived experience, the team directly support several of the EUmetriosis project’s core objectives, including patient and public involvement, understanding challenges faced by those with endometriosis, and ensuring that communication and dissemination efforts reflect real-world experiences.
The social science lens offered by this research complements the biomedical work of other work packages, expanding the project’s impact beyond clinical boundaries and enabling biomedical insights to be used to their greatest advantage.
This work will feed into a range of outputs, from academic publications and policy recommendations to public engagement initiatives, such as workshops and events.
Ultimately, this work seeks to align policies and healthcare practices with the actual experiences of those affected, fostering a more equitable, empathetic, and effective approach to care.
If you live with endometriosis and are interested in getting involved, keep an eye on our website and social media for updates.