CoAct for Mental Health
Assemblea Comunitat Salut Mental | Credits: Sara López
Co-Researchers Journey@Credits: VerityHarrison.pdf
Voting during the Assemblea Comunitat Salut Menta | Credits: Sara López
One of the drawings in the chatbot (1) | Credits: Pau Badia
CoAct for Mental Health chatbot | Credits: Sara López
One of the drawings in the chatbot (2) | Credits: Pau Badia
One of the drawings in the chatbot (2) | Credits: Pau Badia
CoAct for Mental Health is a citizen science project in which people experiencing mental health problems and their families are placed at the center. The project is aligned with World Health Organization demands for enhancing community-based approaches in mental health services. The participation of people with lived experience of mental health problems is key to transform mental health worldwide.
32 people with mental health problems and family members have become Co-Researchers and have co-designed the first citizen science chatbot. The CoActuem per la Salut Mental (CoAct for Mental Health) Telegram Chatbot has shared hundreds of micro stories written by the Co-Researchers. The micro stories are mental health first-hand experiences on social interactions with close family, friends, workmates, neighbors, etc.
The aim of the chatbot is to engage a wider public and learn about the chatbot participants’ feedback. The chatbot has facilitated the continuous collection of responses from hundreds of participants over several years, in a private and safe space. The participants contributed to data collection that explores social support networks in mental health. These networks are grounded on social interactions, and they facilitate recovery processes, improve the quality of life, and act against social exclusion.
Face-to-face sessions with Co-Researchers were designed to interpret the data from the chatbot. During a final assembly with a wide mental health community, 14 recommendations were delivered to high-level local and regional representatives and they were also published in the form of European and local policy briefs. The project is framed within a citizen social science defined as participatory scientific research co-designed and driven by groups sharing a social concern. The transdisciplinary research proposed combines social sciences methods such as auto-ethnography with a computational social science approach, including complex systems and networks theory.
We want to thank the 32 Co-Researchers, the 900 chatbot participants and the 50 organizations and institutions involved; the discussions and work with Santi Seguí, Hayat Said, Constanza Jacques; and Canòdrom (Barcelona council) for hosting the project.
CoAct for Mental Health is part of CoAct funded by the European Union’s Horizon 2020 Research and Innovation program under grant agreement No. 873048. From 2023, the project has received partial financial support through grants PID2019-106811GB and PID2022-140757NB-I00 funded by MCIN/AEI/10.13039/501100011033 and by "ERDF A way of making Europe".
CoAct for Mental Health (ES) was led by the research group OpenSystems from the Universitat of Barcelona (Josep Perelló, Isabelle Bonhoure, Franziska Peter, and Anna Cigarini). OpenSystems develops citizen social science projects and involves communities in a vulnerable situation. Salut Mental Catalunya has been a key partner as a civil society organization that represents people with mental health problems and their relatives (Bàrbara Mitats). The 32 Co-Researchers joined the project through an Open Call in 2020. They were involved in all research steps and in the results dissemination, as experts-in-the-field. The Knowledge Coalition, made of representatives of organizations involved in mental health care provision, were involved from 2020 to late 2022. Other key members: Itziar González-Virós (participation and cooperation), Pau Badia (chatbot drawings) and Verity Harrison (storytelling).
Josep Perelló (ES) is the project leader of CoAct. He is full professor at the University of Barcelona (UB), researcher at the UB Institute of Complex Systems (UBICS). He is also the founder and research leader of the OpenSystems which develops projects with citizen participation and artistic practices. He has been the responsible and the curator of the Laboratory Space in Arts Santa Mònica for the UB (2009-2012), the coordinator of the Barcelona Citizen Science Office of the Barcelona Council until 2019, and one of the curators of the Barcelona Science Biennale 2019 and 2023, among others.
Isabelle Bonhoure (ES) is the CoAct for Mental Health project coordinator. She is a researcher and coordinator of the OpenSystems group at the University of Barcelona (UB), which she joined in 2013, after a PhD in Materials Science and research and science communication experiences in multiple fields. She was involved in more than a dozen local, national, and European citizen science projects, focusing on citizen science co-creation processes in schools and in public libraries, experimentation in public spaces, and citizen social science projects with citizens’ groups in a vulnerable situation.
CoAct for mental health stood out to us as an excellent example of citizen social science, involving patients with lived experience of mental health issues, and their families, as co-researchers and co-producers of evidence on their experiences of social support networks in their communities. The project developed an open-source chatbot as a tool for autoethnography, demonstrating great innovation and creativity in using digital technology to support and foster inclusive community building.
These citizen researchers contributed their daily micro-stories to create a body of evidence that aims to shift the paradigm for mental health care away from a biomedical approach towards personalized medicine and a community-centered approach, showing that social support networks can be deployed in mental health care for recovery, well-being, crisis management, and to prevent isolation and exclusion. A small and dedicated core group of 32 citizen scientists participated throughout the entire life cycle of this co-creation project, from inception to data analysis and interpretation, and even participating in presenting the resultant policy recommendations, while a further 900 citizens used the chatbot to engage with the research.
This project allows citizens to play an active role in research that directly impacts their lives and harnesses the power of technology to include marginalized voices as active participants in the transformation of mental health care. Technology in this case facilitates the participation of citizens in developing a personalized approach to healthcare and medicine. Overall the CoAct project fosters an open and inclusive civil society by empowering their community to critically engage with digital technologies—a worthy winner of the 2024 Digital Communities award.