Work

“The more you learn, the more you can influence”—learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden

Year: 2026

Type: article

Abstract: Introduction: Parkinson's disease (PD) is the fastest growing neurological condition, making it a public health concern. There is still much to be learned about this complex disease, and citizen science-the involvement of the public in scientific research-has been used for public health initiatives in other conditions. Meaningful engagement in science requires knowledge and skillset to do so, including a foundational understanding of one's condition. Learning circles are a well-established peer-learning format which have been used for patient education in other conditions. Aim: To explore the potential of learning circles for strengthening self-care and citizen science in Parkinson's disease. Methods: Four rounds of online learning circles (6-9 persons with PD, 1 h/week over 3 weeks) were held between May-July 2025, with 21 participants completing a whole round, and eight dropped out. Semi-structured interviews were conducted before and after the intervention, and the 16 participants who participated in both were included in the analysis. Data were analyzed using a framework-based longitudinal thematic approach. Participant-by-theme matrices captured individual change and group patterns, and findings were synthesized under the three World Bank's pillars of empowerment (resources, agency, context), with color coding distinguishing timepoints. Results: Resources: Participants described gaining new knowledge and mindset of PD on a general and personal level, in part through peer-learning. Agency: Participants expressed self-efficacy and began seeing themselves as the main driver of their care, resulting in (re-)engaging in self-care. Context: The dual researcher-PwP role of the facilitator proved crucial. The digital format was appreciated, and challenges in healthcare and society were discussed. Conclusions: Learning circles show promise as a format for strengthening self-care and citizen science in Parkinson's disease. This participatory approach may advance citizen science by turning lived experience into collective insights.

Source: Frontiers in Public Health

DOI: 10.3389/fpubh.2025.1717528

Authors: Jamie Linnea Luckhaus, Therese Scott Duncan, Carina Hellqvist, Sara Riggare

Institutions: Uppsala University, Linköping University, Linköping University Hospital

Language: English

Topic: Mental Health and Patient Involvement

Subfield: General Health Professions

Field: Health Professions

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $3,801