Putting the pieces together: endometriosis blogs,cognitive authority,and collaborative information behavior

Objective:

A discourse analysis was conducted of peer-written blogs about the chronic illness endometriosis to understand how bloggers present information sources and make cases for and against the authority of those sources.

Methods:

Eleven blogs that were authored by endometriosis patients and focused exclusively or primarily on the authors'' experiences with endometriosis were selected. After selecting segments in which the bloggers invoked forms of knowledge and sources of evidence, the text was discursively analyzed to reveal how bloggers establish and dispute the authority of the sources they invoke.

Results:

When discussing and refuting authority, the bloggers invoked many sources of evidence, including experiential, peer-provided, biomedical, and intuitive ones. Additionally, they made and disputed claims of cognitive authority via two interpretive repertoires: a concern about the role and interests of the pharmaceutical industry and an understanding of endometriosis as extremely idiosyncratic. Affective authority of information sources was also identified, which presented as social context, situational similarity, or aesthetic or spiritual factors.

Conclusions:

Endometriosis patients may find informational value in blogs, especially for affective support and epistemic experience. Traditional notions of authority might need to be revised for the online environment. Guidelines for evaluating the authority of consumer health information, informed by established readers'' advisory practices, are suggested.

Highlights

• Endometriosis patients who blog about the illness may determine authority of information sources through both cognitive and affective methods.

Implications

• Because patients with chronic illnesses might have different authority criteria than medical librarians do, it could be useful to carefully incorporate electronic patient discussion forums, medical blogs written by laypeople, and other nontraditionally authoritative resources into consumer health information selection policies. Standard biomedical resources are certainly important to recommend to consumers, but they do not convey the complete picture of a chronic illness and its related experience.
• Patients with chronic illnesses and caregivers can benefit from sources such as blogs and online discussion lists that provide social and emotional support as well as accounts of “lived experience.”
• An understanding of the patient''s potential epistemological community can make the librarian''s recommendations more appropriate for the individual user.