Perceived healthcare provider reactions to patient and caregiver use of online health communities

Abstract

Objective: Many Internet users seek health information through online health communities (OHCs) and other social media. Yet few studies assess how individuals use peer-generated health information, and many healthcare providers (HCPs) believe OHCs interfere with patient-provider relationships. This study explored how individuals use OHC content in clinical discussions and how HCPs react to it.

Methods: We conducted in-person and virtual focus groups with patients/caregivers who visited OHCs (n=89). A trained moderator asked about reasons for membership, sharing OHC content with providers, HCP reactions, and preferred roles for HCPs. Two researchers independently coded verbatim transcripts (NVivo 9.2) and conducted thematic response analysis.

Results: Participants described OHCs as supplementing information from HCPs, whom they perceived as too busy for detailed discussions. Almost all participants shared OHC content with HCPs, although only half cited OHCs as the source. Most HCPs reacted negatively to OHC content, making participants feel disempowered. Despite these reactions, participants continued to use OHCs, and most desired HCP feedback on the accuracy of OHC content.

Conclusions: Individuals do not use OHCs to circumvent HCPs but instead to gather more in-depth information.

Practice implications: HCPs should discuss OHC content with patients to help them avoid misinformation and make more informed decisions.

Keywords: Online communities; Patient–provider communication; Shared decision making; Social media.