JMIR Publications

ABSTRACT

Background:

Patient experience is an important component of healthcare quality, but conventional approaches to collecting data on the patient experience may not fully capture unsolicited and real-world experiences. Social media provides an abundance of patient-generated content and a complementary source of information on healthcare experiences. However, the ways in which social media data have been used to capture and assess the patient experience in different healthcare settings has not been systematically mapped.

Objective:

This scoping review aims to systematically map available evidence on the social media platforms used by patients to share healthcare experiences, identify the types and forms of information shared, and describe how patient-generated information could be used to inform and improve healthcare service delivery.

Methods:

We conducted a scoping review following the Joanna Briggs Institute (JBI) methodology for scoping reviews and reported it according to the criteria outlined in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). We searched Embase, MEDLINE, and Web of Science in February and April 2025 to identify studies examining patients’, family members’, or caregivers’ use of social media to share experiences and perceptions of healthcare services and providers. Two independent reviewers screened studies and extracted data using Covidence, with disagreements resolved through discussion and consultation with a third reviewer. Extracted data were descriptively analysed and thematically synthesised to map social media use, patient-shared information, and applications of data to improve healthcare quality.

Results:

Sixty studies were identified as meeting the inclusion criteria. Facebook and Twitter/X were the most commonly used platforms, followed by Yelp and physician-rating websites. Patient-generated content covered informational, experiential, interpersonal, clinical, and psychosocial dimensions of healthcare, with platforms used for peer support, information-seeking, provider evaluation, and quality-improvement activities. The evidence base was predominantly observational and qualitative, with limited mixed-methods and experimental research. Social media provided timely and naturalistic insights into patient experiences and patient-defined dimensions of care, including communication, responsiveness, waiting times, and quality. However, evidence linking social media data to provider choice or objective clinical outcomes was limited and inconsistent.

Conclusions:

Social media provides a rich and timely source of patient-generated information and is an important platform for patient engagement, empowerment, and peer support. It has potential to complement conventional patient-experience measures and inform healthcare quality improvement, but its effectiveness in improving health-system outcomes remains insufficiently established. Further research should combine computational methods that analyse large-scale social media data with qualitative approaches that capture the context and meaning of patient narratives, strengthen evidence from diverse settings, particularly low- and middle-income countries, and evaluate how social-media-informed interventions can be responsibly integrated into healthcare systems. Clinical Trial: Not applicable