Peer-Generated Health Information: The Role of Online Communities in Patient and Caregiver Health Decisions.
Individuals increasingly access peer-generated health information (PGHI) through social media, especially online health communities (OHCs). Previous research has documented PGHI topics, credibility assessment strategies, and PGHI's connection with well-being. However, there is limited evidence on where, when, and why individuals seek PGHI and how they use PGHI in health decisions. We conducted in-person and online focus groups with verified OHC members (N = 89)-representing 50 different medical conditions and 77 OHCs-to explore these topics. Two researchers independently coded transcripts with NVivo 9.2 and thematically analyzed responses. Most individuals accidentally discovered PGHI during Web searches rather than intentionally seeking it. Individuals valued PGHI primarily as an alternative information source about treatment options, self-care activities, and health care provider questions rather than a source of emotional support, and they acknowledged PGHI's limitation as anecdotal evidence. Individuals used PGHI as a springboard for additional research and patient-provider discussions, ultimately making treatment decisions alongside providers. These findings suggest that individuals use PGHI in much the same way they use traditional online health information and that PGHI facilitates, rather than obstructs, shared decision making with health care providers.
a Center for Communication Science , RTI International , Research Triangle Park , North Carolina , USA.
Douglas J
DJ
Rupert
a Center for Communication Science , RTI International , Research Triangle Park , North Carolina , USA.
Jennifer
J
Gard Read
b Social and Health Organizational Research and Evaluation Program , RTI International , Research Triangle Park , North Carolina , USA.
Jacqueline B
JB
Amoozegar
a Center for Communication Science , RTI International , Research Triangle Park , North Carolina , USA.
Rebecca R
RR
Moultrie
a Center for Communication Science , RTI International , Research Triangle Park , North Carolina , USA.
Olivia M
OM
Taylor
c Office of Prescription Drug Promotion, Center for Drug Evaluation and Research , U.S. Food and Drug Administration , Silver Spring , Maryland , USA.
Amie C
AC
O'Donoghue
c Office of Prescription Drug Promotion, Center for Drug Evaluation and Research , U.S. Food and Drug Administration , Silver Spring , Maryland , USA.
Helen W
HW
Sullivan
D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D054626:Consumer Health Information; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D057226:Information Seeking Behavior; D020407:Internet; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology* / Q000706:statistics & numerical data; D010379:Peer Group; D012944:Social Support; D055815:Young Adult