Background

Lay online communication about health-related issues has in recent years largely been associated with the spread of misinformation and decreased trust in healthcare. Such communication has included claims about systemic side effects of the copper IUD. In Sweden, a social media group centered on this issue now gathers around 8,700 members. This study aimed to use the case of reported yet unestablished side effects of the copper IUD to investigate experiences of and reasoning about healthcare encounters between caregivers and patients contesting established medical knowledge.

Methods

We conducted qualitative, semi-structured, digital group interviews with members of the social media group (seven groups, n = 23) and with midwives and gynecologists (six groups, n = 15). We also gathered essays written by social media group members (n = 23). The material was analyzed thematically.

Results

The participant accounts pointed towards tensions related to principles of evidence-based medicine, i.e., perceived insufficiency of research on the safety of the copper IUD and lack of clarity in routines for reporting and following up suspected side effects, and of patient-centered care, i.e., listening respectfully to patients. Tension between caregivers’ obligation to adhere to evidence-based medicine while also providing patient-centered care was noted.

Conclusion

Healthcare providers’ efforts to assess and address patient claims contesting established medical knowledge should include ensuring and communicating sufficient research, clarifying procedures for reporting suspected side effects, and improving person-centered care. This can increase the quality of care while contributing to the mitigation of distrust in healthcare and the spreading of health-related misinformation.