10 de October de 2023

Citizen science in health: the path to transformative solutions

Citizen participation in health research is key. Citizens have relevant and experiential knowledge that is often far from the research community. Pursuing this objective, at Science for Change we offer services based on citizen science, applying our own, highly inclusive and reproducible co-creation methodologies, to address needs that may arise in the field of health.

Including citizens in scientific health research is possible and necessary. From the identification of a need or challenges, the generation of data, in the design of scientific research, or in its evaluation… Involving citizens provides a perspective that considers people’s needs and priorities, so that the results are more applicable, more aligned with social needs.

Today, October 10, is World Mental Health Day, an important day on the calendar for everyone. Did you know that almost 3 million people have a diagnosis of depression in Spain, making it the most prevalent mental illness in our country? The data is clear: mental health is an issue that affects us all. Participatory research is an opportunity to take that first step in providing transformative solutions to people.

From the health area at Science for Change we apply these co-creation methodologies in the field of mental health, to promote social innovation, hand in hand with both the people affected and the scientific community. For this reason, we are part of the Mental Health Cluster to continue working to create spaces where we can talk openly about mental health.

On the other hand, we have also collaborated with the Xarxa TECSAM to give a voice to women affected by mental health problems first-hand. The objective has been to address the challenges they face from a gender perspective and make them reach the research community, so that they have an effect on their research. We believe in the power of co-creation, where affected citizens actively participate in identifying challenges, generating recommendations and solutions.

The potential of participatory methodologies is enormous. They contribute to research and training and, at the same time, improve the psychological and emotional well-being of the participants. Involving citizens as co-researchers in all phases of the project is crucial so that their experience guides the results of the research

Nora Salas Seoane

Head of health at Science for Change

And the applications of collaborative research are endless. In the field of scientific research, we have also collaborated with the Sant Pau Research Institute (IBB of the Sant Pau Hospital) to develop research projects on women’s health, which include citizens in the research, according to with the principles of Responsible Research and Innovation (RRI).

To this end, research and clinical staff, citizens and patients have joined forces during several co-creation sessions to identify 3 major challenges from which to build these research projects.

To co-design this type of collaborative research projects, it is essential to set objectives, map the agents involved according to the quadruple helix model, and from this, define who to include, how, when and in what way. It is also important to define the indicators to evaluate the active participation of citizens in the projects, in order to determine their success.

Another success story from the Science for Change health area is the first-person endometriosis pilot. For three years, we led the Catalan cluster of the European TRANSFORM project, to experiment with different innovative participatory methodologies. One of the pilot projects we carried out within the framework of the project was in the area of women’s health, with the pilot on endometriosis first-hand. In this collaborative research, health professionals and women with endometriosis worked hand in hand to delve deeper into their biopsychosocial experiences of the disease and their experiences and needs regarding health services. One of the results was the publication of a public policy brief with recommendations co-created by women for the improvement of health services in relation to endometriosis. The next step is the implementation of therapeutic groups to improve the patient’s well-being on a psychological and emotional level at the Sant Pau Hospital thanks to the Impulsa Awards from the Consorci de Salut i Social de Catalunya.

The final objective of the methodologies that we apply at Science for Change has an ambitious but achievable objective: to have an impact on people and public policies, transcending the merely academic field. Applying citizen science and co-creation methodologies is the first step.