First-person experiences of endometriosis in Catalonia: recommendations of women with endometriosis for improving health care services and public policies. TRANSFORM Policy Brief 2022

Salas Seoane, Nora, Reinoso Botsho, Diana, Perucca Iannitelli, Carla
2022 · doi:10.5281/zenodo.7248107 · W6950409116
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A participatory study involving 20 women co-researchers in Catalonia generated first-person recommendations to improve diagnostic and care services for endometriosis, aiming to enhance public health policies.

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This policy brief presents findings from a participatory citizen science project involving twenty women with endometriosis in Catalonia who acted as co-researchers. The study aimed to document first-person experiences of the disease and generate recommendations for improving diagnostic processes, healthcare services, and public policies. The authors highlight how these personal narratives can raise awareness among policymakers and health professionals to enhance the overall quality of life for patients. This paper is centrally about endometriosis — specifically focusing on patient-reported outcomes and systemic improvements in care delivery within the Catalan context.

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Abstract

This Policy Brief is the result of a participatory research using citizen science methodologies where women have acted as co-researchers talking in first person about endometriosis in Catalonia. The research aims to explain and raise awareness about how endometriosis is experienced and how it affects people's overall health, as well as for the women themselves to generate first-person recommendations to improve diagnostic and care services. This Policy Brief is aimed at policy makers and health professionals. This research has been made possible thanks to the active participation, motivation and enthusiasm of 20 women co-researchers who have been involved in the different phases of the scientific process. We are very grateful for their support, dedication and effort throughout the research, and we hope to achieve, as they wish, an impact on public health policies that will result in an improved approach to endometriosis at the health level that will improve the quality of life of present and future patients. This citizen science pilot is part of the European TRANSFORM project (grant agreement N.872687). This document reflects the views only of the authors, and neither the European Commission nor the Research Executive Agency can be held responsible for any use which may be made of the information contained therein.
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First-person experiences of endometriosis in Catalonia: recommendations of women with endometriosis for improving health care services and public policies. TRANSFORM Policy Brief 2022 Authors/Creators - 1. Science for Change Description This Policy Brief is the result of a participatory research using citizen science methodologies where women have acted as co-researchers talking in first person about endometriosis in Catalonia. The research aims to explain and raise awareness about how endometriosis is experienced and how it affects people's overall health, as well as for the women themselves to generate first-person recommendations to improve diagnostic and care services. This Policy Brief is aimed at policy makers and health professionals. This research has been made possible thanks to the active participation, motivation and enthusiasm of 20 women co-researchers who have been involved in the different phases of the scientific process. We are very grateful for their support, dedication and effort throughout the research, and we hope to achieve, as they wish, an impact on public health policies that will result in an improved approach to endometriosis at the health level that will improve the quality of life of present and future patients. This citizen science pilot is part of the European TRANSFORM project (grant agreement N.872687). This document reflects the views only of the authors, and neither the European Commission nor the Research Executive Agency can be held responsible for any use which may be made of the information contained therein. Files 202211 Policy Brief Endo EN.pdf Files (2.1 MB) | Name | Size | Download all | |---|---|---| | md5:ad48621a365593dd519ad293a88e524c | 2.1 MB | Preview Download |

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