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Photo by Frederic Bartl from Pexels. 

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.

NEXT STEPS 

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. 

Catalonia cluster - health pilot

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The month of April saw the launch of two citizen science pilots in Catalonia. Thanks to citizen participation, these pilots aim to generate scientific evidence that will inform public policies and their better alignment with societal needs. 

Pilot 1. Citizen science for the co-design and implementation of an “interactive waste game” that contributes to improving the selective collection of municipal waste.

The first pilot, developed in the municipality of Mollet del Vallès, addresses  a local challenge to increase and improve waste separation at source. 

The first phase of the pilot is based on the co-creation of an “Interactive waste game” that will bring together the knowledge and skills of local citizens and students of Master‘s degrees from the Autonomous University of Barcelona. This interactive game will then be used as a citizen science tool to:

  • raise awareness on negative impacts of waste on health and the environment;
  • collect data on citizens behaviours, attitudes, habits, perceptions and preferences towards waste management; 
  • identify barriers for the implementation of improved waste collection systems.

The collected data will help design the new waste management contract as well as the municipality’s waste innovation public procurement project.

Pilot 2. Endometriosis in the first person: participatory research on experiences, assessments and needs of people with endometriosis

The second pilot is developed together with Sant Pau Hospital and the Catalan Agency for Health Quality and Evaluation (AQuAS) to tackle the invisibility, under-diagnosis and lack of research into endometriosis, a condition affecting people worldwide of which the exact cause still remains unknown. 

The first phase of the pilot will consist of collecting information from a wide and diverse range of people suffering from endometriosis. The collected data will gather  first-hand experiences of people with this condition and their assessment of and needs for diagnostic, care, support services and resources, all this feeding a policy brief addressed to policy makers and healthcare staff and officials with a view to improving care and support services for patients with endometriosis.

The second phase of the pilot will bring together women and healthcare professionals in a co-creation exercise of a tool designed to improve self-awareness of one’s body and early diagnosis of the disease.

Photo by Cátia Matos from Pexels.


EU flag This project has received funding from the European Union's Horizon2020 research and innovation programme under grant agreement No 872687. This website reflects only the authors' view and the REA and the EC is not responsible for any use that may be made of the information it contains.
Project Coordinator: Angela Simone Fondazione Giannino Bassetti angela.simone@fondazionebassetti.org
 
contact: info@transform-project.eu