Photo: XPatient Barcelona Congress.
28 – 29 September 2022
The seventh edition of the “XPatient Barcelona” congress took place on September 28-29 and the TRANSFORM project was one of the protagonists of the congress. The pilot project “Endometriosis in first person: participatory research on experiences and assessments of women with endometriosis for the improvement of health services” was selected as one of the five most outstanding and complete experiences presented at the congress.
The TRANSFORM project (funded under H2020) brings together three European regions (Lombardy, Brussels-Capital and Catalonia) to experiment with different innovative participatory methodologies to make the regional research and development and innovation policies more accountable. In Catalonia, a citizen science pilot on endometriosis has been carried out with the aim of involving people suffering from endometriosis to better understand their experiences at a biopsychosocial level as well as with health services. The patients then co-create recommendations for the improvement of health services and influence health policies.
“Endometriosis in the first person: participatory research on experiences and assessments of women with endometriosis for the improvement of health services” pilot aims to improve diagnostic care services and health care for endometriosis. The pilot is developed in collaboration with the Hospital de Sant Pau and the Agency for Health Quality and Evaluation of Catalonia (AQuAS), as well as with the Economic Promotion area of the Generalitat de Catalunya and the OpenSystems research group, the latter two, partners of the TRANSFORM Catalan Cluster, led by Science for Change.
Within this pilot, a group of women, who actively participated as co-investigators, was created to delve into the experiences of endometriosis. During the participatory sessions, they identified needs, made an assessment of the services and resources for diagnosis, care and support for people suffering from endometriosis and drafted recommendations for their improvement.
On Thursday, September 29, Nora Salas Seoane, Head of the Health Area of Science for Change., presented the work carried out within the framework of the TRANSFORM project on “Participatory and co-creation methodologies, involving first-person experiences to improve care services and inform public policies: the case of endometriosis as an underdiagnosed disorder that affects women’s health“ during the session “Experiences and debate: the response in times of crisis“, moderated by Patricia Ripoll, patient, health communicator and patient experience expert. Representatives from the Bellvitge University Hospital, the Terrassa Health Consortium, the Sant Joan de Déu Research Institute, the Guttman Institute and Athenea solutions also participated in this session.
About the “XPatient Barcelona Congress”
The XPatient Barcelona Congress is an appointment with the main actors of the health ecosystem to share innovation, technology and evidence in improving the Patient Experience, of the caregivers / or people in charge and of the professionals in this field. It is an opportunity to discuss and advance, together with all the agents involved, a common and better-informed vision of improving our health systems and the benefits for patients. The engine of this change must be the detection of unmet needs and the proposal of care packages to respond to these needs, depending on local availability.
More information about the congress and registration here.