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Pilot 2. Endometriosis in the first person: participatory research on experiences, assessments and needs of people with endometriosis
This is the second pilot project defined by the Catalan cluster, in collaboration with Sant Pau Hospital and the Catalan Agency for Health Quality and Evaluation (AQuAS). It consists of involving women suffering from endometriosis in participatory research to learn more about their experiences and their assessments and needs in relation to health services for the care of the disease. The aim is to jointly draw up a report with recommendations to inform the new Endometriosis Care Model in Catalonia, which is currently under review.
The first phase of the pilot involved 24 women from Catalonia who had been diagnosed with endometriosis. From April to July, in 4 sessions, these women have shared first-hand accounts in a structured way on different aspects of their experience with the disease and their needs in relation to the health system. In the last session, they participated in the writing of a first draft of the recommendations report.
The next phase consists of analysing the information gathered and drafting the final report with recommendations, a phase in which women will also play a leading role, together with and on equal footing with the experts of the Catalan cluster.
At the end of the pilot, a public presentation of the results will be organised, inviting all the actors in the territory involved in endometriosis care services at different levels.