The use of social media in the self-management of chronic diseases: views of patients and doctors

BACKGROUND: Despite the deep integration of social media into daily self-management practices of people living with chronic conditions, there are still conflicting opinions about the role of social media in disease self-management. Comparing the perspectives of patients and physicians is useful in understanding potential tensions and facilitating more effective collaboration between patients and physicians. The aim of the research was to find out the opinions of patients and doctors about the benefits and risks of using social media for disease self-management. METHODS: We used mixed methods convergent parallel design combined an internet survey and in-depth interviewing. We collected data from online questionnaire posted in online communities for people with chronic diseases on social media platforms Vkontakte and Facebook (N 204). The qualitative phase used in-depth interviews with doctors (N 23). We analyzed quantitative data in SPSS and qualitative data in Nvivo. RESULTS: From the perspective of patients, the main benefits include access to information about treatment through peer-to-peer expertise (70,8%) and sharing personal experience of disease (60,9 %). Patients indicated risks of unproved information (92,2%) and breach of anonymity (71,5%). All interviewed doctors were skeptical about benefits of the use of social media by patients. They see the main risks in the dissemination of unreliable and unqualified information about treatment and the destruction of the usual patterns of doctor-patient relationship. CONCLUSIONS: There are contradictions between views of patients and doctors on benefits and risks of using social media in disease self-management. Doctors underestimate the role of social media in chronic diseases self-management and doubt in ability of patients to critically evaluate information. KEY MESSAGES: • Understanding differences in viewpoints can help improve doctor-patient relationships in an eHealth environment. • Resalts promotes patient empowerment. Research was supported by RSF (project No 22-18-00261).