BackgroundHealth communication research and guidelines often recommend that medical terminology be avoided when communicating with patients due to their limited understanding of medical terms. However, growing numbers of e‐patients use the Internet to equip themselves with specialized biomedical knowledge that is couched in medical terms, which they then share on participatory media, such as online patient forums.ObjectiveGiven possible discrepancies between preconceptions about the kind of language that patients can understand and the terms they may actually know and use, the purpose of this paper was to investigate medical terminology used by patients in online patient forums.DesignUsing data from online patient–patient communication where patients communicate with each other without expert moderation or intervention, we coded two data samples from two online patient forums dedicated to thyroid issues.ResultsPrevious definitions of medical terms (dichotomized into technical and semi‐technical) proved too rudimentary to encapsulate the types of medical terms the patients used. Therefore, using an inductive approach, we developed an analytical framework consisting of five categories of medical terms: dictionary‐defined medical terms, co‐text‐defined medical terms, medical initialisms, medication brand names and colloquial technical terms. The patients in our data set used many medical terms from all of these categories.Discussion and conclusionsOur findings suggest the value of a situated, condition‐specific approach to health literacy that recognizes the vertical kind of knowledge that patients with chronic diseases may have. We make cautious recommendations for clinical practice, arguing for an adaptive approach to medical terminology use with patients.
The internet has revolutionised the ways in which patients acquire medical information, a development which has clearly been welcomed by patients: seeking out health information online is now the third most popular activity after internet searches and e-mail (Timimi 2012). However, it has led to concerns about the quality of the information, the ability of lay people to understand it (Gerber/Eiser 2001) as well as potential cyberchondria (Starcevic/Berle 2013). In light of these confl icting perspectives, this paper examines one such source of online information, namely, the patient forum where patients communicate with other patients about a particular medical condition. Although doctor-patient communication in the clinical situation has been extensively researched, little is known about how patient-patient communication is managed in online situations such as patient forums. The purpose of this paper is to contribute to research in that relatively un-researched area by examining how patients manage relational and informational aspects of communication in online patient forums. Whilst a typical interactional structure of the patient forum exchange is question and answer, we focus on responses to questions on patient forums. This paper reports on the fi ndings of a thematic analysis (Braun/Clarke 2006) of an online thyroid disease patient forum, investigating how interpersonal aspects are negotiated where patients share condition-related knowledge. We identify themes that relate both to informational and relational aspects as well as themes that fi t under a new category which we call 'info-relational' as it subsumes informational and relational elements. We discuss a number of theoretical implications, which are valuable as existing health communication models and understandings of patient expertise have yet to catch up with the effects of new media such as online patient forums.
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