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

J Med Libr Assoc. 2011 April; 99(2): 127–134.
doi: 10.3163/1536-5050.99.2.004 PMCID: PMC3066582

Copyright © 2011, Authors.
Putting the pieces together: endometriosis blogs, cognitive authority, and collaborative information behavior*
Diane M Neal, PhD
Assistant Professor ; Email: dneal2@uwo.caPamela J McKenzie, PhD
Associate Professor and Assistant Dean Research; Faculty of Information and Media Studies, The University of Western Ontario, North Campus Building, Room 240, London, ON, Canada N6A 5B7 ; Email: pmckenzi@uwo.caReceived June 2010; Accepted October 2010.
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AbstractINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCESAbstractObjective:
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. Other Sections▼
AbstractINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES 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.
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AbstractINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCESINTRODUCTIONChronic illness is a context in which people may do a great deal of “information work” [1]. Chronic illnesses are often broad in scope and effect, difficult to diagnose, complex, ever changing, and not amenable to conventional treatments. They often have significant physical, emotional, and social repercussions, and their management requires work by the ill person and those around the ill person, much of which may require considerable time and energy, be mentally and emotionally demanding, and occur beyond doctors' offices [1].A major barrier to information access expressed by people with chronic illnesses is the difficulty of finding information relevant to their situations [1, 2]. Chronic illness is an important impetus for collaborative information behavior [3, 4]: As do information seekers in other contexts, people with chronic illnesses tend first to seek help or information from people like themselves [5]. Acquaintances with the same disease can provide socially appropriate opportunities to expose a seeker to disease-relevant information and support [6]. The desire for support underlies the creation of resources, services, and groups in which peers physically or virtually “come together to provide emotional and other support through sharing their personal lived experience as well as exchanging other resources” [7]. Participants in health-oriented support groups [8, 9] and online resources such as discussion forums and peer-authored blogs [10] report receiving both informational and emotional support. Illness blogs have many of the advantages of face-to-face peer sources without the stigma of approaching a peer with a personal question [6].Peer sources may also offer a highly valued and particularly relevant kind of information based on “wisdom and know-how gained through reflection upon personal lived experience” [11] rather than on professional knowledge. Experiential knowledge “consists of the statements, stories or narratives reflecting some aspect of an individual's experience that she or he values and trusts as knowledge. To an uninvolved observer, much experiential knowledge may sound like or appear to be small talk or everyday conversation” [11].The significance of experiential knowledge for people with chronic illnesses poses particular challenges for information professionals, who are schooled in selecting traditionally authoritative resources and employing evidence-based techniques for evaluating health information sources. Selection criteria for a health sciences journal include, among other things, its perceived “scholarly” status, its publisher, the affiliations of the journal's authors and editors, and its impact factor [12]. Health sciences monograph selection tools consist of resources such as core lists, vendors, and book reviews in medical journals [13]. Guidelines for consumer health information collection development focus on patient education literature written by health professionals, as well as by patient advocacy and professional organizations. Consumer-oriented library materials might also include general medical reference books [14]. These and other standard evaluation criteria assume that the most authoritative resources are authored by health care professionals and researchers. However, people with chronic illnesses may use authority criteria that are completely distinct from those that information professionals use [15]. For example, while a blog describing the author's experience with a chronic disease is unlikely to meet librarians' traditional standards for authority, it might be considered very authoritative by someone who is learning to cope emotionally with a new diagnosis [16].Library and information science (LIS) researchers have long been interested in the ways that individuals and communities evaluate the authority of information sources. The concept of cognitive authority has offered a useful framework for explaining an individual's situated judgments about the authority of information sources [17]. Cognitive authority is a particularly important concept for understanding users' evaluations of web resources [18]. It has been defined by Rieh, following Wilson [17], as “the extent to which users think that the information is useful, good, current, and accurate. Cognitive authority is operationalized as to the extent to which users think that they can trust the information” [18]. More recently, LIS researchers have adopted new approaches to the study of authority that consider not the cognitive processes by which an individual makes decisions about an information source, but the social practices whereby a community collaboratively negotiates what counts as an authoritative information source [19–,21]. Depression patients were found to rely on a wide range of resources, while using personal, experiential knowledge as confirmation of treatment effectiveness [20]. A study of the ways that members of a chronic illness community collectively filter, interpret, evaluate, and synthesize as they share can provide insight into the ways that authority is developed and challenged in that community [4]. Studies such as this can provide practitioners with new ways of thinking about the criteria they use when evaluating or recommending peer sources for chronic illness.This article analyzes the ways that peer bloggers with endometriosis present information sources and make cases for and against their authority. Endometriosis is an enigmatic chronic disease that causes uterine tissue implantation in areas other than the uterus. Highly underdiagnosed, it may affect up to 25% of reproductive-age women. Symptoms vary widely, but the most frequent complaint is pelvic pain, and endometriosis is a cause of common infertility. The broad spectrum of presentation and symptoms, as well as the absence of satisfactory treatments, leaves patients largely at a loss for information that they perceive as reliable [22]. For these reasons, Whelan characterizes women with endometriosis who work together to find answers as an “epistemological community” [23]. This analysis will show how bloggers' justification strategies draw on understandings that members of their specific epistemological community commonly hold.Blogs authored by people with chronic illness are of particular interest to LIS researchers, because they provide naturalistic sources of data about the blogger's illness-related information work [2], including selection, justification, evaluation, and interpretation of information identified by the blogger from other sources. Comments and links on blogs provide evidence of what Talja and Hansen call a “community of sharing” [4], a group of people who develop shared understandings and create knowledge structures that may in turn be used by others. Blogs allow both members and nonmembers of epistemic cultures to interact in dialogue and to participate in the culture [24]. They therefore offer the possibility of extending the face-to-face social networks that Veinot [6] has shown to mediate information validation. LIS researchers have begun to study social and community aspects of health- and illness-related information work [6, 25–,27]. Important findings about the readers of illness blogs have been identified [10]. However, there has so far been little consideration of what the blogs themselves can tell librarians and researchers about how people living with chronic illness evaluate information sources.
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