Online peer support in rheumatology: a mixed methods exploration of patient and clinician views and experiences

Online peer support groups (OSGs) are increasingly used by patients with rheumatic diseases, yet their benefits, risks and impact on the clinician-patient relationship are not well characterized. We examined how patients and clinicians perceive and experience OSGs.

Mixed methods combining online surveys and interviews with rheumatology patients and clinicians. Measures of satisfaction with life and care were compared by t-tests between OSG members and non-members. Free-text and interview data underwent thematic analysis.

Three themes were identified from surveys (n = 1316 patients, n = 317 clinicians) and interviews (n = 19 patients, n = 14 clinicians). (1) Validation and affirmation: OSGs provided emotional reassurance, understanding and belonging, especially those with rare or 'invisible' diseases who felt disbelieved by others. (2) Patient empowerment through health literacy: OSGs filled informational and relational gaps left by time-limited healthcare systems, offering practical, experience-based advice. Although 85% of patients reported finding helpful information on OSGs, 48% reported misinformation circulating in groups. Effective moderation was viewed as key. (3) Tensions and inequities within peer spaces: 71% of clinicians viewed OSGs as helpful, while many worried about negativity and distrust in healthcare systems. Members described 'toxic positivity', 'toxic negativity' and exclusionary dynamics within the OSGs, with younger, male and racially minoritized patients more likely to report feeling unwelcome.

OSGs can offer meaningful emotional and practical benefits to patients with rheumatic diseases, particularly those who feel marginalized in social or clinical contexts. However, these benefits coexist with challenges around misinformation, inclusivity and the clinician-patient relationship.