TRANSFORM video - First-person experiences of endometriosis in Catalonia (health pilot)

Science For Change
2023 · doi:10.5281/zenodo.7763247 · W6912933529
other OA: green CC0
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This project utilized participatory research methods to co-create recommendations for improving endometriosis care, resulting in six general and twenty-eight specific guidelines written from the first-person perspective of patients. The initiative aimed to inform public health policies and address the significant physical, psychological, social, and professional consequences suffered during the prolonged diagnostic delay that typically spans eight to ten years. Funded by the European Union's Horizon2020 programme, the study focuses on enhancing clinical approaches and service delivery for the ten percent of reproductive-age individuals globally affected by the condition. This paper is centrally about endometriosis — specifically focusing on patient-led advocacy and policy recommendations to improve diagnosis times and care quality.

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Abstract

Endometriosis affects 10% of girls, women (and sex-gender diversities) of reproductive age worldwide. Its diagnosis takes between 8 and 10 years from the onset of symptoms, a time during which these people suffer serious physical, psychological, social and professional consequences. Participatory research on endometriosis has resulted in the co-creation of 6 general and 28 specific recommendations, written in the first person by patients, with the aim of informing public health policies and contributing to improving the clinical approach and care services to patients. Results: https://zenodo.org/record/7248108#.Y-IiEC0w2X1 TRANSFORM project has received funding from the European Union's Horizon2020 research and innovation programme under grant agreement No 872687. This video reflects only the author's view and the funding organisations are not responsible for any use that may be made of the information it contains.
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TRANSFORM video - First-person experiences of endometriosis in Catalonia (health pilot) Authors/Creators Description Endometriosis affects 10% of girls, women (and sex-gender diversities) of reproductive age worldwide. Its diagnosis takes between 8 and 10 years from the onset of symptoms, a time during which these people suffer serious physical, psychological, social and professional consequences. Participatory research on endometriosis has resulted in the co-creation of 6 general and 28 specific recommendations, written in the first person by patients, with the aim of informing public health policies and contributing to improving the clinical approach and care services to patients. Results: https://zenodo.org/record/7248108#.Y-IiEC0w2X1 TRANSFORM project has received funding from the European Union's Horizon2020 research and innovation programme under grant agreement No 872687. This video reflects only the author's view and the funding organisations are not responsible for any use that may be made of the information it contains.

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endometriosis

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last seen: 2026-05-10T10:44:35.985608+00:00
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