The inclusion of Patient Experience (PX) in health quality assessment is a key element in improving health policy planning. PX seeks to improve the patient’s experience from their first contact with the health system to their discharge from hospital. But what exactly is PX, and how can it be integrated into practice?

TRANSFORM’s Catalan cluster leads a citizen science pilot project on endometriosis with the aim of involving the patient and co-creating recommendations for the improvement of healthcare services.

The Catalan cluster is led by Science for Change, in collaboration with the Economic Promotion Area of the Catalan Government and the OpenSystems research group of the University of Barcelona.

The Catalan cluster leads two citizen science pilots – a waste pilot and a health pilot.  The pilots integrate the quadruple helix stakeholders to favour a collaborative and inclusive workspace. The process and the results aim to impact public research and innovation policies, both at the local and regional levels, and for citizen science to be included in the new Research and Innovation Strategy for Smart Specialization in Catalonia (RIS3CAT).

catalonia regional cluster

Endometriosis, the silent disease

The health pilot,  called Endometriosis in the first person: participatory research on experiences, assessments and needs of people with endometriosis”  aims to improve the diagnosis and care services for patients suffering from endometriosis. The pilot is developed in collaboration with the Hospital de Sant Pau and the Agency for Quality and Health Assessment of Catalonia (AQuAS).

For decades, there has been a gender bias in medical research and disease diagnosis. From an androcentric point of view, medicine has investigated the manifestations in men and has extrapolated the results to women. Due to this bias, there are diseases that have been completely silent and invisible. Endometriosis is a clear example of this.

Endometriosis is a disease in which the endometrial tissue grows out of its normal place. It is a chronic disease that can have an extreme effect on different spheres of a person’s life. Currently, there is no cure, only treatments to reduce or control symptoms.

Generally, women with endometriosis suffer from various symptoms, such as severe menstrual cramps, chronic pain, fertility problems and associated psychological disorders, tiredness or gastrointestinal conditions that can be disabling.

First-hand patient experience: the TRANSFORM methodology

In this pilot project patients are put in the centre of the process, having a new active role as managers of their own health and data generators.  They provide knowledge based on their own experiences and needs to improve the management of health services.  Incorporating the PX can improve care services and influence health policy planning, making it more inclusive and effective at all levels.

TRANSFORM pilot has engaged a group of women who are actively participating as co-investigators to delve into their personal experiences with the disease, identify needs, assess services and resources for the diagnosis, care and support for patients with endometriosis and write recommendations.

Women participating in the pilot have been engaged thorugh different sessions using participatory and co-creation methodologies (both online and offline) divided into two phases: 

  • From April to June 2021, the first phase of the project began by forming a group of 20 women to explore key issues and identify needs related to health services.  The first phase had three sessions.

The objective was to create a safe environment, building trust, so participants feel comfortable sharing their first-hand testimonies. Participants shared their journey through health services, from the first symptoms to the present (patient journey), their needs and key psychosocial aspects that are affected by the disease.

Catalonia I health pilot I endometriosis participatory research
  • The second phase, from July 2021 to April 2022, focused on co-creation of a recommendation report with the group.  Two participatory workshops were held with the participants to co-develop and finalise the report. 

First, the participants shared recommendations to improve patient care, diagnosis and support resources and services. In the second workshop, these recommendations were prioritised and refined with the aim of co-creating the final report. 

Endometriosis health pilot - Catalan cluster

The intention is to link this report of recommendations that have emerged from the patient experience with the ”Endometriosis Care Model” developed by GENCAT and AQUAS report “Key elements that influence the patient experience” to achieve a real impact in health policies.

Next steps: Looking for a real impact on public policies

The third phase of the pilot project, which is due to end in October this year, will analyse the information and draw up the results and recommendation report. Both documents will be disseminated among different stakeholders, health professionals and policy makers. The objective is to seek a real impact on regional public health policies related to endometriosis, such as the Endometriosis Care Model.

In order to achieve a more concrete impact, a direct dialogue between the participating women and the professionals from Hospital Sant Pau, to specify possible improvements that can be implemented in the hospital in the coming years.

The results and the process followed in this pilot project will be analysed and published in several scientific articles that will contribute to knowledge about the experience of the disease and the needs expressed by the patients.

“The impact of citizen science is multifaceted, as demonstrated in this pilot. The Generalitat de Catalunya values the lessons learned from the participatory methodology, in its effort to make research and innovation policies more responsible and more aligned with social needs"
Diana Reinoso
Diana Reinoso
TRANSFORM Project Manager, Science for Change

As a result of the Generalitat de Catalunya’s participation in the TRANSFORM project, citizen science will appear in the next RIS3CAT as one of the methodologies to promote the transition toward a greener, more digital, resilient and fairer socio-economic model.

This pilot project demonstrates that patient experience is key, and necessary, to improve care services and influence health policy planning. Citizen science and participatory strategies used in this pilot are a clear example of how it is possible to incorporate patients’ experiences and transform, together with them the health and care services.

The TRANSFORM project brings together three European regions (Lombardy, Brussels capital and Catalonia) to experiment with different innovative participatory methodologies. 
The goal: to make its research, development and innovation (R+D+Ii) activities and policies more responsible so that they are more aligned with social needs, applying the principles of “Responsible Research and Innovation” (RRI).

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 are 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