How do online health communities influence medical treatment decisions? Examining patient and caregiver experiences

BACKGROUND: One-fourth of Internet users with chronic illnesses have joined or visited online health communities (OHCs) to address health issues or find peers with similar concerns. OHCs enable sharing of medical experiences, and studies demonstrate that OHC participation can improve social support, intervention adherence, and patient-provider discussions. However, no study has explored how OHCs influence treatment decisions. METHODS: We conducted in-person and online focus groups with verified members of OHCs (n=89), such as PatientsLikeMe.com and Exchanges.WebMD.com. A trained moderator conducted each group and asked about membership decisions, online treatment discussions, healthcare provider reactions, and treatment decisions. Four researchers independently coded transcripts with NVivo 9.2 to identify themes.RESULTS: Most participants joined OHCs soon after major diagnoses, although some joined when facing treatment decisions or at illness suspicion. Researching treatment options, preparing for medical appointments, and searching for more illness details were the most common reasons for joining. Treatment options and diagnosis were the most common topics, and OHC members were more likely to share personal treatment experiences than factual treatment information. Participants judged information credibility by degree of community consensus and perceived similarity with members. They often tried to verify information using online medical resources. Participants used OHC information to weigh treatment options, research treatment ideas, and inform treatment discussions with healthcare providers. In most cases, participants selected treatments in tandem with providers rather than requested specific treatments from them. CONCLUSIONS: Patients and caregivers use OHCs to learn about medical treatment options rather than as substitutes for healthcare provider advice.