On November 21, the Catalan cluster of the TRANSFORM project held its final event to share the results and lessons learned acquired during these 3 years of work. Under the title “Responsible research and innovation, citizen science and public policies” more than 70 people attended the event held at the Palau Robert.

The TRANSFORM project brings together three European regions (Lombardy, Brussels-Capital and Catalonia) to experiment with different innovative participatory methodologies. The Catalan cluster has used citizen science as an instrument to move towards a greener, digital, resilient and fair socio-economic model. More specifically, two citizen science pilots have been carried out in Catalonia: one on the selective collection of waste and another on the health of women with endometriosis.

To close these three years of collaborative work, the Catalan cluster -led by Science for Change, in collaboration with the Department of Economic Strategy of the Generalitat de Catalunya and the OpenSystems research group of the University of Barcelona – has organised the final act of the TRANSFORM project at local level. One of the objectives of the Catalan cluster was to introduce the principles of responsible research and innovation (RRI) in the practice of public policies and in the Strategy for Smart Specialisation of Catalonia (RIS3CAT 2030).

The event began with a welcome and presentations by Dr Josep Perelló, leader of the OpenSystems group, and Rosa Arias, CEO of Science for Change. During their presentations, both underlined the importance and transformative potential of citizen science as a tool to improve public policies.

This introduction was followed by the round table presentations of two citizen science pilots that have been carried out in the Catalan territory with representatives of each pilot.

HEALTH PILOT

In the field of women’s health, the Catalan cluster has worked together with the Department of Gynecology and Obstetrics of the Hospital de la Santa Creu i Sant Pau and the Agency for Health Quality and Assessment of Catalonia (AQuAS) on the pilot about endometriosis in first person. In this collaborative research, health professionals and women with endometriosis have worked hand in hand to deepen their biopsychosocial experiences of the disease and their experiences, needs, and recommendations regarding health services.

20 women diagnosed with endometriosis participated as co-investigators, playing an active role in the data collection phases, in the formulation of recommendations and in the dissemination of the results. As a result, a policy brief has been published for decision-makers and health personnel, presenting the recommendations co-created by women for the improvement of health services in relation to endometriosis.

Dr. Elisa Llurba, Director of the Obstetrics and Gynecology Service, Dr. Ramon Rovira, coordinator of the Surgical Area, the Gynecology Oncology Area and the Endometriosis Unit of the Hospital de la Santa Creu i Sant Pau, Marta Fonseca and Noelia Pitarque, co-investigators of the project, participated in this round table, moderated by Nora Salas Seoane, Head of the Health Area at Science for Change.

“Applying citizen science to a women’s health issue such as endometriosis has allowed us to give a voice, accompany and empower people with endometriosis who have been able to work collaboratively with health professionals towards a common goal: to make visible an under-diagnosed disease that affects 10% of women and contribute to the improvement of health services and early diagnosis thanks to its recommendations. We want to move towards a medicine that really takes into account once and for all the needs of women”

Nora Salas Seoane, Head of the Health Area at Science for Change.

WASTE PILOT

On the other hand, in the field of waste management and sustainability, the Catalan cluster has worked together with the Mollet del Vallès City Council, the Autonomous University of Barcelona and secondary schools in Mollet del Vallès to contribute to improving the municipal selective waste collection system.

For this pilot project, a digital game on waste, called “Dilemma R“, was co-designed as a tool to inform citizens about innovative selective collection systems and, in turn, collect their preferences and barriers when implementing them. In the design process, the pilot followed a participatory model, involving as many actors as possible. As proof that citizen science can have an impact on public policies, the City Council approved the new contract for cleaning public spaces and waste collection, taking into account the proposals from the pilot, which have been evaluated and incorporated into the new contract.

This round table was attended by Guifré Ortiz, Head of the Urban Services Section of the Mollet del Vallès City Council, Sandra Palma, Manager of the Mollet del Vallès Municipal Institute of Education, Myra Ronzoni, Operational Manager of the ECIU University project from the Autonomous University of Barcelona and Adrià Navarro, a student at the Sant Gervasi School, moderated by Diana Reinoso, Project Manager of the TRANSFORM project in Science for Change.

“Citizen science has allowed us to involve the public, and especially students, in improving waste management in the municipality, in addition to obtaining very relevant information for the successful implementation of innovative systems such as door-to-door or smart containers. It is a replicable project that can be used by other town halls in the same situation, that are considering making a change in the system and that want to involve citizens in the process in a dynamic and innovative way.”

Diana Reinoso, Project Manager at Science for Change.

Impact on public policies

To close the event, Tatiana Fernández, Head of the Economic Strategy Area of the Secretariat for Economic Affairs and European Funds of the Generalitat de Catalunya, shared with the attendees the role of citizen science within the framework of RIS3CAT 2030 and also its experience and learning from the TRANSFORM project.

“When we started the TRANSFORM project, we were not sure how to collaborate in it, nor did we know what citizen science would bring us. Now we have seen that it is a tool that allows us to improve the effectiveness of public policies and services”

Tatiana Fernández, Head of the Economic Strategy Area of the Secretariat for Economic Affairs and European Funds of the Generalitat de Catalunya

Finally, the participants discussed the challenges and opportunities of citizen science in Catalonia in a round table led by Tatiana Fernández, Xavier Gironès, Coordinator of the Territorial Impact of Knowledge of the Department of Research and Universities of the Generalitat de Catalunya, Xavier Ariño, Head of the Office of Institutional Projects of the Autonomous University of Barcelona, Diana Escobar, Coordinator of Projects of the Department of Science and Universities of the Barcelona City Council, Ignasi Labastida, Delegate of the Rector in Open Science of the University of Barcelona, moderated by Sergio Martínez, Secretariat for Economic Affairs and European Funds of the Department of Economy and Finance of the Generalitat de Catalunya.

Some of the key points that were discussed in this round table were: the need to establish a return to citizenship, have platforms or agents that act as a link between the different actors involved, the need to create spaces for innovation around the territory and generate a relationship of trust between the agents involved in citizen science projects.

Citizens have a key role in political decision-making and the TRANSFORM pilot project is a clear example of this. Yesterday, the Catalan cluster that has led this citizen science pilot project, presented the results and conclusions to members of the Mollet del Vallés council, to contribute to the improvement of the municipal selective waste collection system.

The TRANSFORM project brings together three European regions (Lombardy, Brussels capital and Catalonia) to experiment with different innovative participatory methodologies. Specifically, in Catalonia a citizen science pilot has been carried out in the city of Mollet del Vallès to contribute to improving the selective collection of municipal waste. The Catalan cluster has used citizen science as an instrument to move towards a greener, more digital, resilient and fairer socioeconomic model.

For this pilot project, “Dilemma R“, a digital game on waste was co-designed as a tool to inform citizens about innovative selective collection systems (smart containers and door-to-door waste collection) and, in turn, gather their preferences and barriers when implementing them. In the design process, a participatory model has been followed, based on co-design methodologies, involving the maximum number of actors involved.

This process was carried out through a total of four sessions in which different profiles of citizens of Mollet, different departments of the city council and the students of the Degree in Management of Smart and Sustainable Cities of the UAB participated. Later, the digital development of the game proceeded.

Once “Dilemma R” had been created, 60 students from four educational centres in Mollet (Institut Vicenç Plantada, Escola Sant Gervasi, Center d’Estudis Mollet and Escola Anselm Clavé) put it into practice with their families and with citizens at street level to collect enough information to process and analyse it.

Through this app, it has been possible to collect evaluations, preferences and barriers of citizens regarding innovative selective collection systems. In addition, this tool has also had a double impact: on the one hand, it has increased public awareness of these innovative waste collection systems, and on the other, it has contributed to generating active awareness of the environmental impact of waste, contributing to co-responsibility.

With the “Dilemma R” game, 402 valid responses from the citizens of Mollet have been collected; The results make it possible to identify trends that serve as a guide for the city council in making decisions on how to implement a new waste collection system.

As a result of these answers, a results report has been prepared that has included the recommendations made both by the professional research team and by the Mollet students themselves. 10 conclusions stand out:

Degree of knowledge of citizens about the waste collection system

Knowledge about innovative systems is low and knowledge about the current selective collection system does not reach 50%.
The vast majority of people who have declared they have no prior knowledge on the subject, have acquired it through Dilemma R.

General preference of citizens for smart containers or for the door-to-door system

The vast majority of people surveyed have opted for smart containers.
As an exception, in the Santa Rosa neighbourhood, the preference for door-to-door delivery and smart containers is very similar.

Relevance that different variables may have as barriers or facilitators of the adoption of the new systems by citizens

Most of the people surveyed are sensitive to the environmental issue and in favour of receiving economic incentives for the use of new systems, despite the fact that this implies limitations to their privacy (that the city council has more information about the recycling practices of each person) or practicality (for example, time or calendar limitations when disposing of rubbish).
Economic incentives seem to have a greater potential as facilitators of the adoption of the new systems than the environmental benefit, except when faced with the possibility that the new systems generate more dirt on the street.
There is a similar number of people who choose to receive economic incentives at the individual level and at the collective or community level
Privacy limitations have not emerged as a very relevant aspect when opposed to environmental benefits, much less when opposed to economic incentives.
There are two aspects of practicality that deserve attention as possible barriers to implementation: 1) the time and calendar limitation associated with the door-to-door system; 2) the possibility that the new systems will generate more dirt on the street.
For people aged 65 or over, the complexity of using a card or a mobile phone to activate the containers appears as a more relevant barrier than having to adapt to a schedule or a calendar.

Impact on public policies of Mollet

As a result of these conclusions, the Mollet students and the professional research team involved in the project have drawn up a series of recommendations associated with the conclusions of the study. These recommendations range from the development of information and environmental education campaigns, to proposals for the implementation of economic incentives to increase the separation of waste, through the design of specific actions to support the elderly in the use of the new systems.

“Participating in this TRANSFORM pilot project has been very important for two reasons: first, to be able to know the opinion of our citizens. We want to make changes to our waste management model, and we need to know what they think and what they know. Second, through citizen participation we have been able to learn about proposals raised directly by citizens, and we want to study them because they are realistic and interesting. Thanks to all this participatory process, we have been able to know what citizens want, fear or do not see clearly, in order to make better decisions at the public policy level.”

Raúl Broto, First Deputy Mayor of Mollet del Vallès

As proof that citizen science can have an impact on public policies, on June 28 the Mollet del Vallés city council approved the new contract for cleaning public space and waste collection for the next 5 years. The objective of this new contract is to intensify street cleaning and increase the selective collection of the municipality to 60% in 2030, complying with European regulations.

Some of the proposals from the pilot that have been evaluated and incorporated into the new contract for the city’s waste collection service are, for example, implementation of smart containers in some neighbourhoods of the city or the need to use additional resources to avoid littering the street due to uncivil practices.

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.

Through citizen science, Science for Change has led this pilot project in collaboration with the Gynecology Area of the Hospital de la Santa Creu i Sant Pau, the Agency for Health Quality and Assessment of Catalonia (AQuAS), the Economic Strategy Area of the Generalitat de Catalunya and the OpenSystems research group of the University of Barcelona.

“Endometriosis in the first person: participatory research on experiences and recommendations of women with endometriosis for the improvement of health services“ is an innovative pilot that applies citizen science in women’s health within the framework of the European Project H2020 TRANSFORM. This pilot has involved women with endometriosis to deepen their experiences of the disease and their experiences regarding health services.

In the research, 20 women diagnosed with endometriosis participated as co-investigators, having an active role in the data collection phases, in the formulation of recommendations and in the dissemination of the results.

Marta Fonseca has been suffering of endometriosis for 18 years. She has undergone four surgeries and has participated in the pilot.

“The fact of being in this group does not cure, but it helps a lot to share this experience and contribute to these recommendations. Yes, it is a complex disease, but if there are so many women who suffer from it, more attention must be paid to the various areas that endometriosis involves. Endometriosis exists and we must have better ways to deal with it with more informed professionals and resources dedicated to research.”

With the results of the research, a policy brief has been written for policymakers and health personnel, presenting the recommendations co-created by women for the improvement of health services. The policy brief was presented on the 19^th October at an event at the Hospital de la Santa Creu i Sant Pau that was attended by the women participating in the research and Gynecology professionals from the Hospital.

“The pilot and the policy brief aim to give voice and raise awareness about how endometriosis is experienced and its effects on people’s global health, as well as present recommendations to improve diagnostic and health care services.”

Diana Reinoso, Project Manager at Science for Change

The six general recommendations contained in the policy brief are:

Increase awareness of endometriosis at the healthcare level
Develop strategies for an early diagnosis of endometriosis
Improve the process of conveying information to patients to increase self-awareness and contribute to shared decision-making
Define and implement a comprehensive endometriosis management model
Improve care for people with endometriosis in healthcare services
Develop more personalised and patient-informed treatment models

The ultimate goal of the policy brief is to influence public health policies at regional and local level, and specifically, to influence the Endometriosis Care Model of Catalonia, in addition to the new model of innovative approach to the disease in the Hospital of Santa Creu i Sant Pau.

Dr. Ramon Rovira, surgical coordinator of the Gynecology and Obstetrics Service of the Hospital de la Santa Creu i Sant Pau – IIB Sant Pau, in Barcelona, comments that “with the TRANSFORM project we have really put the patient at the center. It has been an opportunity, as a professional, to know first-hand what patients need and a possibility of radical improvement to face changes in the therapeutic approach to this pathology at all levels”. In addition, he adds that the results of this initiative are “a clear example for new projects in different areas of health that allow a paradigmatic change in what patient care entails, in general. Knowing what the patient needs is one of the obligations of the medical care of the future”.

According to Nora Salas Seoane, Head of the Health Area of Science for Change, this pilot project is a clear example of how we can use citizen science, participatory strategies and co-creation in health to incorporate the patient’s experience and transform together with them certain health practices and their healthcare services.

“We are helping to understand women’s health from their perspective and their feelings, taking into account gender barriers in health. This pilot demonstrates that the patient experience is key and necessary to improve care services and influence the planning of health policies.”

Nora Salas Seoane, Head of the Health Area of Science for Change

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Three years of the TRANSFORM project: results and learning in the application of citizen science in Catalonia

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Results and impact of the TRANSFORM citizen science pilot in the new selective waste collection system in Mollet del Vallés

Impact on public policies of Mollet

A participatory research on endometriosis results in six recommendations to inform public policies in Catalonia