Catalan cluster Archives - TRANSFORM

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

Lucia Princikova — Tue, 29 Nov 2022 12:15:11 +0000

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.

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

Lucia Princikova — Mon, 28 Nov 2022 12:44:12 +0000

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.

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

Lucia Princikova — Thu, 03 Nov 2022 10:36:54 +0000

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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Endometriosis in First Person: the pilot of the European project TRANSFORM recognised as one of the five best projects of the XPatient Barcelona Congress

Lucia Princikova — Wed, 05 Oct 2022 10:07:23 +0000

Photo: XPatient Barcelona Congress.

28 – 29 September 2022

Online

The seventh edition of the “XPatient Barcelona” congress took place on September 28-29 and the TRANSFORM project was one of the protagonists of the congress. The pilot project “Endometriosis in first person: participatory research on experiences and assessments of women with endometriosis for the improvement of health services” was selected as one of the five most outstanding and complete experiences presented at the congress.

TRANSFORM at the XPatient Barcelona

The TRANSFORM project (funded under H2020) brings together three European regions (Lombardy, Brussels-Capital and Catalonia) to experiment with different innovative participatory methodologies to make the regional research and development and innovation policies more accountable. In Catalonia, a citizen science pilot on endometriosis has been carried out with the aim of involving people suffering from endometriosis to better understand their experiences at a biopsychosocial level as well as with health services. The patients then co-create recommendations for the improvement of health services and influence health policies.

“Endometriosis in the first person: participatory research on experiences and assessments of women with endometriosis for the improvement of health services” pilot aims to improve diagnostic care services and health care for endometriosis. The pilot is developed in collaboration with the Hospital de Sant Pau and the Agency for Health Quality and Evaluation of Catalonia (AQuAS), as well as with the Economic Promotion area of the Generalitat de Catalunya and the OpenSystems research group, the latter two, partners of the TRANSFORM Catalan Cluster, led by Science for Change.

Within this pilot, a group of women, who actively participated as co-investigators, was created to delve into the experiences of endometriosis. During the participatory sessions, they identified needs, made an assessment of the services and resources for diagnosis, care and support for people suffering from endometriosis and drafted recommendations for their improvement.

On Thursday, September 29, Nora Salas Seoane, Head of the Health Area of Science for Change., presented the work carried out within the framework of the TRANSFORM project on “Participatory and co-creation methodologies, involving first-person experiences to improve care services and inform public policies: the case of endometriosis as an underdiagnosed disorder that affects women’s health“ during the session “Experiences and debate: the response in times of crisis“, moderated by Patricia Ripoll, patient, health communicator and patient experience expert. Representatives from the Bellvitge University Hospital, the Terrassa Health Consortium, the Sant Joan de Déu Research Institute, the Guttman Institute and Athenea solutions also participated in this session.

About the “XPatient Barcelona Congress”

The XPatient Barcelona Congress is an appointment with the main actors of the health ecosystem to share innovation, technology and evidence in improving the Patient Experience, of the caregivers / or people in charge and of the professionals in this field. It is an opportunity to discuss and advance, together with all the agents involved, a common and better-informed vision of improving our health systems and the benefits for patients. The engine of this change must be the detection of unmet needs and the proposal of care packages to respond to these needs, depending on local availability.

More information about the congress and registration here.

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TRANSFORM at the ECSA 2022 conference

Lucia Princikova — Mon, 26 Sep 2022 09:00:20 +0000

Photo by Michal Knotek, Pexels.

5 – 8 October 2022

Berlin, Germany

The ECSA Conference 2022 will be held from October 5-8 in Berlin, Germany, brining together researchers from all disciplines, scientists, practitioners, activists, funders, policymakers, non-governmental organisations, artists, and other interested citizens worldwide to reflect, discuss, and network on the topic of Citizen Science for Planetary Health.

TRANSFORM AT ECSA 2022 exhibition

Join TRANSFORM’s interactive workshop

A Citizen Science project which contributes in improving the selective municipal waste collection system

THURSDAY, 6 October 2022 I 16:15 – 17:45

Organised by the Catalan Cluster, Diana Reinoso (Science for Change), TRANSFORM Project Manager will introduce the activities and results of the waste citizen science pilot. Drawing on this, participants will be invited to design their implementation plan for innovative waste systems in an imaginary city, taking on a specific role (different profiles of citizens and city council technicians), play the game, visualise data and, based on the results obtained, make a decision on which plan and strategies to follow to increase the percentage of selective collection in their city.

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FEMaLe & TRANSFORM webinar: First-person experiences of endometriosis

Lucia Princikova — Thu, 22 Sep 2022 09:10:51 +0000

13 October 2022 I 19:00 – 20:30

Online

TRANSFORM is joining forces with FEMaLe project to organise a webinar

First-person experiences of endometriosis

Participatory research, needs and recommendations of people with endometriosis.

THURSDAY 13 October 2022 I 19:00 – 20:30

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.

In this webinar, Diana Reinoso and Nora Salas Seoane from Science of Change will present the methodology, co-creation and participatory activities involving patients, as well as the challenges encountered and how they overcame them. The research results will be presented along with recommendations for improving healthcare services for people suffering from endometriosis and influencing policy.

The webinar will be led by Ulrik Bak Kirk, FEMaLe Project Coordinator.

FEMaLe – Finding Endometriosis using Machine Learning is a Horizon2020 project with focus on improving diagnosis, prevention and care in endometriosis via machine learning and artificial intelligence.

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The Catalan Think Tank organises capacity building sessions to promote RRI, public participation and citizen science

Lucia Princikova — Fri, 23 Oct 2020 13:00:46 +0000

The TRANSFORM Catalan Cluster, composed by Science for Change, the Regional Catalan Government (Generalitat de Catalunya) and the research group OpenSystems of the University of Barcelona, aims to help governments and agents involved in the Catalan R&I ecosystem incorporate citizen science methodologies in their strategies, policies and projects. For this purpose, two main activities are being developed: the creation of a Catalan Think Tank and the implementation of pilot projects in citizen science.

The process has started with the creation of the regional multistakeholder Think Tank composed of 55 agents from key regional administrations, local administrations, companies, universities and research institutes (39 organisations). The members also represent a variety of sectoral areas, including Environmental Quality, Waste, Health and Water.

As part of the Think Tank activities, the Cluster is holding capacity building sessions in a form of a series of participatory webinars. These webinars aim to facilitate learning among the members, foster open discussions and experimentations about citizen science as a useful tool to promote participation and involvement of citizenship in the design of public policies or services with the aim of improving efficiency.

“I find the participation in the TRANSFORM webinars particularly interesting due to its focus on citizen science as a way of integrating RRI in the territory and in territorial policies. The sessions facilitate the exchange of opinions and debate in a multisectoral environment. At the same time they open new perspectives on how citizen science is becoming a fundamental tool in decision-making and transformative innovation in the territory”, says Xavier Ariño Vila, the Head of Strategic Projects at the Autonomous University of Barcelona.

The first webinar took place in July, the Think Tank was launched and its members began to build a common base from which researchers, public policy managers and private sector jointly explored and analysed the main concepts of RRI and citizen science with practical examples, highlighting the value that citizen science can bring to projects and public policies. Entities with experience in citizen science had been able to explain their areas of work and main projects.

The second webinar took place in September. The group went deeper into the citizen-generated data as a tool to inform public policies. In thematic groups, participants detected relevant data sets possibly generated by citizens, discussed the role of the different stakeholders to develop citizen science projects and the enabling condition for citizen-generated data to actually inform public policies.

The results of the webinars so far show that there is a high interest in introducing citizen participation in research and innovation projects since it is considered essential to bring them closer to society. Many participants expressed this will, not only applicable to specific projects and initiatives but on a broader scale of governance to deepen the possibilities of public participation into policy making processes.

“Thanks to TRANSFORM webinars, we had the opportunity to go deep into the citizen science concept and patterns. We learned from organisers and shared experiences with other participants. The network that was created is very useful for us and will hopefully create synergies and new opportunities for mutual learning in the future. Thanks again Science for Change for providing us with this positive experience”, says Sara Mas Assens, the International Project Manager of the Vall d’Hebron Institute of Research (VHIR).

The next webinar will be held in November and the group will work on co-designing practical cases based on citizen science needs. If you want to know more about the TRANSFORM’s Catalonia Regional Cluster, follow us on Twitter.

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