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“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

BACKGROUND: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggeste...

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Autores principales: Brady, Ellen, Segar, Julia, Sanders, Caroline
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5083845/
https://www.ncbi.nlm.nih.gov/pubmed/27737819
http://dx.doi.org/10.2196/jmir.6019
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author Brady, Ellen
Segar, Julia
Sanders, Caroline
author_facet Brady, Ellen
Segar, Julia
Sanders, Caroline
author_sort Brady, Ellen
collection PubMed
description BACKGROUND: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. OBJECTIVE: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions. METHODS: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. RESULTS: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors. CONCLUSIONS: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.
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spelling pubmed-50838452016-11-07 “I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions Brady, Ellen Segar, Julia Sanders, Caroline J Med Internet Res Original Paper BACKGROUND: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. OBJECTIVE: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions. METHODS: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. RESULTS: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors. CONCLUSIONS: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy. JMIR Publications 2016-10-13 /pmc/articles/PMC5083845/ /pubmed/27737819 http://dx.doi.org/10.2196/jmir.6019 Text en ©Ellen Brady, Julia Segar, Caroline Sanders. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 13.10.2016. https://creativecommons.org/licenses/by/2.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/ (https://creativecommons.org/licenses/by/2.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
Brady, Ellen
Segar, Julia
Sanders, Caroline
“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions
title “I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions
title_full “I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions
title_fullStr “I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions
title_full_unstemmed “I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions
title_short “I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions
title_sort “i always vet things”: navigating privacy and the presentation of self on health discussion boards among individuals with long-term conditions
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5083845/
https://www.ncbi.nlm.nih.gov/pubmed/27737819
http://dx.doi.org/10.2196/jmir.6019
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