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Abstract
Online social networking sites are web services in which users create public or semipublic profiles and connect to build online communities, finding like-minded people through self-labeled personal attributes including ethnicity, leisure interests, political beliefs, and, increasingly, health status. Thirty-nine percent of patients in the United States identified themselves as users of social networks in a recent survey. "Tags," user-generated descriptors functioning as labels for user-generated content, are increasingly important to social networking, and the language used by patients is thus becoming important for knowledge representation in these systems. However, patient language poses considerable challenges for health communication and networking. How have information systems traditionally incorporated these languages in their controlled vocabularies and thesauri? How do system builders know what consumers and patients say? This comprehensive review of the literature of health care (PubMed MEDLINE, CINAHL), library science, and information science (Library and Information Science and Technology Abstracts, Library and Information Science Abstracts, and Library Literature) examines the research domains in which consumer and patient language has been explored. Consumer contributions to controlled vocabulary appear to be seriously under-researched inside and outside of health care. The author reflects on the implications of these findings for online social networks devoted to patients and the patient experience.
Highlights
Online social networks, or social networking sites (SNS), have been a feature of the web since 1997, with the founding of SixDegrees.com
What do we know about the language of laypersons, inside and outside the formal health care setting? How do we discover it? And how has this knowledge been used to contribute to controlled vocabularies and thesauri for health information representation and provision?
The library and information science databases had an overlap of 29 articles (8%, 5 due to internal database duplication, leaving 24 or 6%)
Summary
Social networking sites (SNS), have been a feature of the web since 1997, with the founding of SixDegrees.com. Advocacy, and support organizations oriented to specific medical diagnoses were among the first communities of Internet users [3], and SNS for patients are a part of the web landscape—making ‘‘community’’ the ‘‘killer app in health care’’ [4]. PatientsLikeMe [6] hosts patient communities in 16 varied diagnostic categories, including approximately 5% of all amyotrophic lateral sclerosis (ALS) and primary lateral sclerosis patients in the United States [7, 8]. This SNS incorporates a bulletin board, and clinical tools. Community members report symptoms to find other ‘‘patients like them’’; ‘‘tagging’’ of symptoms becomes useful data ‘‘emergent from shared information’’ [9]
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