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).


Photo by Mikita Yo on Unsplash.

After the online participatory process concluded in 2021, the Lombardy cluster is now implementing an in-person public deliberation in the form of a Citizens’ Jury.

Lombardy regional cluster

The Citizens’ Jury on Responsible Smart Mobility takes place on two non-consecutive Saturdays, 11 June and 25 June, in Milan.

The objective? Within the framework of the Regional Strategy on Smart Mobility and Artificial Intelligence Lombardy Region is currently working on the implementation of innovative actions towards a regional responsible data-driven smart mobility. The citizens’ jury will gather citizens’ views on the collection, use and sharing of open data and issue recommendations to shape regional policies and initiatives on this topic.

24 randomly selected citizens from Lombardy come together to deliberate on recommendations for the Lombardy region on responsible (data-driven) smart mobility services in the territory. In the first day, taking place on 11thJune, the citizens met experts from the fields of big data and artificial intelligence, open data, smart mobility, privacy, digital rights and techno-surveillance and gender, data and mobility, providing transparent information and delving into the topic. In the second day, to be held on 25th  June, the citizens’ jury will discuss and deliberate on suggestions for regional policy makers on relevant societal and ethical issues around data-driven mobility in Lombardy.

What is a citizens’ jury? 

Citizens’ juries are a tool to engage citizens on a range of issues. A citizen jury is a method of deliberation developed by the Jefferson Center where a small group of people (between 12 and 24), representative of the demographics of a given area, come together to deliberate on an issue (generally one clearly framed question), over the period of 2 to 7 days. Their small size allows for effective deliberation, but they are sufficiently diverse and citizens are exposed to a wide range of perspectives.



Can citizens be involved in the political decision-making of a municipality? The answer is yes, and in TRANSFORM, we are making it a reality, contributing to the improvement of the selective waste collection system in Mollet del Vallès.

The Catalan cluster set up two pilot projects using citizen science as an instrument to move towards a greener, more digital, more resilient and fairer socio-economic model. 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 a local and regional level, and for citizen science to be included in the new Research and Innovation Strategy for smart specialisation in Catalonia (RIS3CAT).

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.

catalonia regional cluster

WASTE PILOT transforming the selective collection model in Mollet del Vallès

One of the pilots of the Catalan cluster is a citizen science project improving the selective collection of municipal waste, which involves all actors of the quadruple helix – government (both local and regional), academia, private sector and citizens. 

In Mollet del Vallès, the current share of the selective collection is 39%, far from the 55% target set to be achieved by 2025 by the European Union. To increase its efficiency, the city council is considering the implementation of innovative selective collection systems (smart containers and door-to-door collection), but first, it wants to involve the citizens, taking into account their preferences.

Currently, there is little information in Mollet on these preferences and variables that citizens take into account when adopting or rejecting innovations, or the reasons for opposing changes. It’s also of utmost importance that the citizens have prior information and reflect on the pros and cons of these systems in order to issue an informed opinion.

Dilemma R

To contribute to this process, the Catalan TRANSFORM cluster has designed a pilot consisting of the co-creation of a digital game on waste, called “Dilemma R“,  used as a citizen science tool.

This pilot is carried out together with the Mollet del Vallès City Council and in collaboration with the Autonomous University of Barcelona.  In addition to generating useful information for the strategic planning of the future municipal waste collection system, this pilot is also part of the specialization and territorial competitiveness PECT project  “HubB30, beyond circularity” (Operating Program ERDF Catalunya 2014-2020) of the RIS3CAT.

An educational game that is also useful to do science


Co-creation of the digital game “Dilemma R”. The co-creation of the game was carried out through a total of four sessions: two sessions with citizens of Mollet (10-15 people, different profiles), the third with different departments of the city council and the fourth with students of the Smart Cities Management and Sustainability course of the UAB.

Deployment of the game as a tool within a citizen science program, involving 60 secondary school students from four schools in Mollet del Vallès, over four sessions, and 400 respondents. 

 The game has two objectives:

  • On the one hand, to inform citizens about the pros and cons of innovative systems, increase their level of knowledge and promote debate;
  • and on the other, to collect the preferences of citizens and their assessment of different environmental, practical and economic aspects of the new systems to detect the possible barriers to their implementation.

The purpose of this process is to detect the most relevant variables for the different agents involved and co-create the messages and hypothetical situations that would be part of the game.

Once the game had been developed, a citizen science program was deployed together with schools in Mollet del Vallès in which the students were able to participate in the definition of the data collection protocol, in the data collection itself (both in the neighbourhood and with their relatives), in the interpretation of results and in the preparation of proposals for the city council.

Finally, the results will be presented to the city council, which will provide a clearer picture of the preferences of citizens regarding innovative selective collection systems and the most relevant aspects to take into account for their implementation.

The city council, for its part, will reflect on and take into account the results when defining the new waste management contract for the municipality, to be launched at the end of June 2022, and its strategic planning for the future selective collection system in Mollet del Vallès.

Citizen science, a methodology that benefits all the agents involved

For Diana Reinoso, TRANSFORM project manager at Science for Change, citizen science has multiple impacts, and it has been demonstrated in this pilot. The lessons learned from this participatory methodology are being valued by the Catalan government, in its effort to make research and innovation policies more responsible and more aligned with social needs.

TRANSFORM project helped to introduce citizen science into the next RIS3CAT as one of the methodologies to promote a shift towards a greener, more digital,  more resilient and fairer socio-economic model.

On the other hand, this experience shows that collaboration between quadruple helix stakeholders allows for aligning the objectives, perspectives, expertise and efforts and to develop innovations that respond to the challenges that society currently faces.

“Working collaboratively is a challenge, but it allows us to transform the traditional isolation in which the different sectors of society have developed and create new work models oriented towards the common good. Ultimately, this results in more efficient innovation public policies, more aligned with society and with greater acceptability”
Diana Reinoso
Diana Reinoso
TRANSFORM Project Manager, Science for Change

In the case of this pilot, the planning of the future Mollet selective waste collection system will not be based solely on a strictly technical perspective, but the results of a fruitful collaboration between public authorities, academia, private sector and the citizens themselves.

We also see that the participation of society in citizen science projects increases their level of scientific knowledge, in this case, on the issue of waste management. All people who came into contact with the game had the opportunity to obtain accurate information and reflect on the innovative selective collection systems, helping to improve their critical capacity. The results and the process followed in this pilot will be analysed and published in a scientific article, contributing to the social sciences that study environmental behaviour, resistance to change and the social adoption of innovations.


Waste pilot - TRANSFORM Catalonia

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Project Coordinator: Angela Simone Fondazione Giannino Bassetti angela.simone@fondazionebassetti.org
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