First citizen science chatbot opens up research on mental health

Among the attendants in the event, moderated by Itziar González, head of the cooperation processes of the project, were Josep Perelló, professor at the Faculty of Physics, member of the UB Institute of Complex Systems (UBICS) and principal investigator of the project; Marta Poll, director of Mental Health Catalonia; Gemma Tarafa, councillor for Health, Ageing and Care of the Barcelona City Council, and Magda Casamitjana, director of the National Mental Health Pact of the Catalan Government.

Policy recommendations

With the results of the research in hand, 14 policy recommendations have been collectively established, discussed and validated at the Mental Health Community Assembly. These recommendations focus on the close environment, the professional and institutional environment and the social environment, and they put several relevant issues at the centre: first-person training; the role of families and the close environment; the promotion of support for carers; the community approach; the promotion of social support networks and their accessibility; the training of professionals; the prevention of emotional distress; individual and collective empowerment; the fight against stigma; the training of society as a whole; the promotion of advance decision-making plans; and the creation of a mental health data observatory, among others.

The recommendations can also be used to promote transferable actions at local, national, European and international level.

Participatory science at the service of community mental health

For UB Professor Josep Perelló, this initiative highlights the value of a more participatory and participative way of doing science. "In this journey that we are making together in the framework of citizen science, we wanted to transform our scientific knowledge, that is, to do science that can be transformed into initiatives to improve the welfare of society".

Marta Poll, director of Salut Mental Catalunya (Mental Health Catalonia), stressed that "if we put the focus of interest where it is a priority, we will be able to generate changes in people with lived experiences of mental health. There is a growing awareness of the importance of participatory processes, and this project demonstrates this". She also highlighted the value of providing a scientific basis for social support strategies in the field of community mental health.

Institutional commitment

The two institutional representatives who attended the event responded, in a contextualised way, where they would place the actions proposed in each of the recommendations in their policies, committing themselves to be accountable in this space.

Gemma Tarafa, councillor for Health, Ageing and Care at the Barcelona City Council, stated that without the necessary budget it will not be possible to make progress and she also stressed the importance of looking beyond changing mandates and working towards stable and continuous action. She expressed the desire to incorporate all the validated recommendations in the new Mental Health Plan 2023-2027 of the Barcelona City Council and mentioned the need to collect data, following the recommendation to create a mental health data observatory, in order to be able to carry out quality and specific interventions. "Data are extremely important to be able to build a caring Barcelona in the field of mental health", she said.

Magda Casamitjana, director of the National Mental Health Plan of the Catalan Government, affirmed the relevance of following the WHO recommendations. She also reaffirmed the commitment of the Pact to incorporate the various actions proposed at the institutional level, emphasising the inclusion of peer-to-peer from the public sphere, as well as the essential interdepartmental and territorial cooperation and the involvement of the different agents participating in the project.

CoActuamos para la Salud Mental project

CoActuamos para la Salud Mental is part of the European citizen social science project Co-designing Citizen Social Science for Collective Action (CoAct), launched in 2020 and funded by the European Union's Horizon 2020 programme. It has been developed jointly by Salut Mental Catalunya and the OpenSystems research group of the University of Barcelona, with the collaboration of the social architect Itziar González-Virós.

The focus of this research project has been on social support networks in mental health, i.e. people's networks of social relations. The research concludes that, in the case of people with mental health problems, these networks are particularly important: they improve quality of life and well-being, act against social exclusion and are a protective factor against relapse.

Social citizen science and participation in the project

CoActuamos para la Salud Mental is a social citizen science proposal, i.e. a research project co-designed and driven directly by groups of citizens who share a social concern.

In October 2020, an open call was made to all citizens for people with mental health problems and their families to participate in the project —at all stages— as co-researchers. In this way, they could be placed at the centre of the research. Following this call, 32 people joined the project: 24 with their own experience in mental health and 8 family members. The knowledge environment, consisting of a group of 65 representatives from 50 institutions, helped to frame the research and place it in the public and professional domain. The participation of both groups was articulated through processes based on citizen cooperation.

Creation of the chatbot CoActuamos para la Salud Mental

The 32 co-researchers wrote a total of 222 micro-stories about personal experiences of mental health related to social support networks. They were illustrated by the professional cartoonist Pau Badia.

These micro-stories are part of the first chatbot that has been used for a citizen science search open to everyone, via the Telegram app. The research has thus become transdisciplinary, drawing on computational social science and complexity science (and complex network theory). It has also included aspects of social science and research that combines quantitative and qualitative aspects: accounts of lived experiences and focus groups on the meaning of the data.

Using the scientific data taken from the chatbot, they carried out a process of collective understanding and worked on several proposals for collective actions that have been discussed.

Chatbot highlights

To date, 718 people (with or without mental health problems) have entered the Telegram chatbot, i.e. participated in the research. It is worth noting that all of them have responded with the same degree of engagement. A number of relevant issues have been identified:

• 3 out of 4 participants suffers or has suffered from mental health problems.

• 3 out of 10 identify themselves as carers, and 7 out of 10 are women.

• 1 out of 3 say that their work environment does not know about their mental health problems, since they feel particularly vulnerable in this context and prefer not to talk about their situation.

• According to participants with mental health problems, the people who are least involved in their well-being are the neighbours. On the other hand, those who are most involved are the people living with them and close friends. It is therefore necessary to highlight the role of carers and to care for them, support them and provide them with more training and information.

• 1 out of 2 micro-stories talks about mental health stigma, which shows the need to make mental health experiences visible and socialised in order to fight against stigma.

• 1 in 2 people report feeling lost and lonely, which emphasises the need for a better connection between the health network and social support networks.

More information on the project

To learn more about the project, please consult the following links, which contain all the information about CoActuamos and the validated policy recommendations:

• CoActamos for Mental Health project website

• Website of the European CoAct project (coordinated by the UB)

• UBʼs OpenSystems website

• Mental Health Catalonia website

Salut Mental Catalunya (SMC) is a social movement for the representation, care and support of people with mental health problems and their families. The SMC Federation is made up of a network of more than seventy associative movement entities. It has been promoting community mental health, quality of life, the defence of rights, social awareness, equal opportunities and non-discrimination of people with mental health problems and their families for 25 years.

OpenSystems is a transdisciplinary scientific research group working through citizen participation and artistic practices. Since 2012, it has created collective citizen science experiments for public space focused on human mobility, human behaviour or decision-making. It has carried out several research projects that have provided new data and generated knowledge capable of responding to the concerns of groups of citizens. He combines the use of new technologies and co-creation to work on eminently social issues within what is called social citizen science. It is part of the UB Institute of Complex Systems (UBICS).